Here we go again : So after 3 cancelled telephone... - Thyroid UK

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Here we go again

Kimkat profile image

So after 3 cancelled telephone appointments I get this from my endocrinologist, I am rapidly losing my patience with this man and now realise that I must go private. I really wanted to put a load of questions to him, mainly to ask him why he won’t even give me the benefit of the doubt and increase my Levo to 100mcg but it seems like he just can’t find it in him to help. Here’s the letter I got today, note he’s only given me the Tsh, no other test results .

63 Replies

Can't believe they get paid for this. No enquiry whatsoever as to how you are feeling on that dose.

Is he aware you are actually a person with a body .. or does he just think he's getting paid to play bingo with lab numbers ?

Why not Write back to him with all the references for keeping TSH below 2, and inform him you'll be putting dose up yourself , and if he has any concerns about that course of action he should ring you to discuss them ?

Kimkat profile image
Kimkat in reply to tattybogle

During the early and middle of last year he asked me to be patient (ha, I had RAI over 3 years ago!) he has never asked me how I am feeling but I have made a point of telling him exactly how I feel but he’s always managed to poo poo everything that I say and told me that most of my symptoms could be anything, he even told me that I should leave it to the professionals when I quoted references !!! I get increasingly frustrated with him and I think he can hear that in my tone, he cannot wait to get off the phone and that’s abundantly clear. As I get my Levo through the nhs, how could I increase the dosage without at least the GPs consent?

tattybogle profile image
tattybogle in reply to Kimkat

Well , occasionally people with thyroid problems can be bit forgetful, and disorganised . I once went to stay at my mums house 140 miles away , and when i came home i realised i'd left my whole supply at her house and now she'd gone away herself .

So i had to go the the GP's reception and apologise for my stupidity and request they asked the GP to replace my prescription .

Obviously if this happened every couple of months they might have wanted a word with me. but GP's are dealing with disorganised chaotic humans every day of the week.. no reason you can't be one too.

Hay2016 profile image
Hay2016 in reply to tattybogle

Yes my dogs very naughty and eats tablet packets and socks and letters. 😂

Kimkat profile image
Kimkat in reply to Hay2016

🤣🤣

tattybogle profile image
tattybogle in reply to Hay2016

:)

shaws profile image
shawsAdministrator in reply to Kimkat

Medical Professionals do not know everything about clinical symptoms with those who have a dysfunctional thyroid gland.

The following might be helpful:

verywellhealth.com/do-thyro...

Kimkat profile image
Kimkat in reply to shaws

Very interesting, I have terrible brain fog at times and I worry that dementia could be a cause, I forget words all of the time and constantly lose stuff. I don’t understand how a so called ‘expert’ can blatantly disregard a patient’s worry’s and concerns. I’m tired of hearing ‘well you are 67’ or ‘ you’re getting older now, it’s to be expected’

pennyannie profile image
pennyannie in reply to Kimkat

This is typical of low T3 levels - the brain needs an awful lot of T3 in order for you to think and speak coherently - it's called brain fog on here :

My cognitive functions were severely compromised - and I too thought dementia as I was of " an age " and I'd forgotten what the electric kettle was for ???

Your age has nothing to do with it, you haven't a thyroid : using your age is totally disgusting and you and all of us deserve better from a " health care " system.

MMaud profile image
MMaud in reply to Kimkat

How often can you order your repeat?

My GP only prescribes one month at a time, but I can order my repeat, after 21 days, I assume to allow for minor delays in the chain somewhere.

The downside is one seems constantly to be ordering repeats, but it does allow building up a small buffer in supplies.

Is there any potential for you to do something like that?

Kimkat profile image
Kimkat in reply to MMaud

I am the same here, can only reorder after 21 days which means by the time it’s been processed it’s day 24/25.

MMaud profile image
MMaud in reply to Kimkat

I have a reminder set for 21 days, at which time I can assess whether or not I need to order. I can order my repeat in the morning and collect it in the afternoon at the village pharmacy.

Batty1 profile image
Batty1 in reply to Kimkat

You still see him after he said “leave it to the professionals” when you asked a question about your health…. Wow

Kimkat profile image
Kimkat in reply to Batty1

With the covid situation and lack of GP interest, yes I am still with him but hopefully not for much longer, hence me seeking more advice on here.

Batty1 profile image
Batty1 in reply to Kimkat

I hope you do

I'd be inclined to get a quote for a private consultation and send him a proforma invoice.

I’ve been thinking of going private for quite a while now so that will be my next step, I suppose I’ve given this man far too much credit in the past.

SlowDragon profile image
SlowDragonAdministrator

Just testing TSH is completely inadequate

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors

tukadmin@thyroiduk.org

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Graph showing TSH in healthy population

web.archive.org/web/2004060...

Aim is to bring a TSH under 2.5

UK guidance suggests aiming for a TSH of 0.5–2.5

gp-update.co.uk/SM4/Mutable...

Yes I have already been onto my GPs surgery and ashes for the full test results and the receptionist said that’s all there is!! Thank you again SD for your invaluable information.

SlowDragon profile image
SlowDragonAdministrator in reply to Kimkat

Most likely endo is diabetes specialist

Thousands upon thousands of U.K. patients forced to get full thyroid and vitamin testing done privately to make progress

Which brand of levothyroxine are you currently taking

Do you always get same brand

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common, especially if been left under medicated

Presumably you have Graves’ disease

Have you had coeliac blood test

Are you on strictly gluten free diet or tried it

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests

What vitamin supplements are you currently taking

When were vitamin levels last tested

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Come back with new post once you get results

Approx how much do you weigh in kilo

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

Kimkat profile image
Kimkat in reply to SlowDragon

Yes I checked him out he’s diabetic consultant, I have pretty regular private blood tests done and I have forwarded them on to him to no avail. I am on Mercury Pharma and tend to get them now, since I kicked up a stink in the pharmacy. My last bloods with Medicheck was in September.

SlowDragon profile image
SlowDragonAdministrator in reply to Kimkat

What were results in September

Most people when adequately treated will have

TSH around or under 1

Ft4 at least 60-70% through range

Ft3 at least 50-60% through range

Vitamin D at least around 80nmol and around 100nmol maybe better

Folate and ferritin at least half way through range

Active B12 at least over 70 minimum

Approx how much do you weigh in kilo

SlowDragon profile image
SlowDragonAdministrator in reply to Kimkat

How much do you weigh in kilo

Please add September Medichecks results and say what vitamin supplements you are currently taking

Have you had coeliac blood test done

Are you on gluten free diet

Kimkat profile image
Kimkat in reply to SlowDragon

I’m around 70kgs I’m not coeliac. I take Betteryou vit D +K2 spray, b12 and iron (every few days) spray and magnesium.Here is Septembers results

Black and white in shadow
SlowDragon profile image
SlowDragonAdministrator in reply to Kimkat

So vitamin D was very good

Ferritin very low

Many people find Better You iron spray is not very effective

GP should have done full iron panel test for anaemia with such low ferritin

Suggest reading many posts and replies by humanbean on different iron supplements

B12 too high and folate too low

Changing to a daily vitamin B complex instead of just B12 probably a good idea

A vitamin B complex that contains folate, not folic acid

This can help keep all B vitamins in balance

B vitamins best taken after breakfast

Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both are large capsules. (You can tip powder out if can’t swallow capsule)

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Kimkat profile image
Kimkat in reply to SlowDragon

I did an iron panel and my iron was high so I don’t use the spray every day now

Kimkat profile image
Kimkat in reply to SlowDragon

When I asked the GP for an iron panel he side tracked it so I had it done privately

SlowDragon profile image
SlowDragonAdministrator in reply to Kimkat

What were your iron panel results

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Low Ferritin and low thyroid link

healthunlocked.com/thyroidu...

Kimkat profile image
Kimkat in reply to SlowDragon

For some reason I cannot find my iron results?? I know that I didn’t use Medichecks but I can’t remember which company I used. I normally print everything off but for some reason I haven’t. What company would you normally recommend for iron panel?

SlowDragon profile image
SlowDragonAdministrator in reply to Kimkat

Medichecks usually cheaper

Kimkat profile image
Kimkat in reply to SlowDragon

I’ve actually answered myself but there are 3 pages here of my iron tests

Kimkat profile image
Kimkat in reply to SlowDragon

Found them! They were from May21

Colour
Kimkat profile image
Kimkat in reply to Kimkat

Sorry couldn’t fit them on one page

Colour
Kimkat profile image
Kimkat in reply to Kimkat

Last page

Colour
SeasideSusie profile image
SeasideSusieAdministrator in reply to Kimkat

Kimkat

Sorry for late response, playing catch up now.

As these results are from May 2021 it would be worth repeating an iron panel.

Based on those results:

Optimal iron panel levels according to rt3-adrenals.org/Iron_test_... are:

Serum iron: 55 to 70% of the range, higher end for men - yours was 80.84%

Saturation: optimal is 35 to 45%, higher end for men - yours was 44%

Total Iron Binding Capacity (TIBC) or Transferrin: Low in range indicates lack of capacity for additional iron, High in range indicates body's need for supplemental iron - yours was 69.44% so nearer the higher end than lower end

Ferritin: Low level virtually always indicates need for iron supplementation; High level with low serum iron/low saturation indicates inflammation or infection; High level with high serum iron and low TIBC indicates excess iron; Over range with saturation above 45% suggests hemochromatosis - yours was low

So your results were a bit conflicting, serum iron and saturation showed that you didn't need to take iron (were you supplementing at the time?) yet your TIBC being nearer the higher end of the range suggested you needed to supplement. In circumstances like this I would take more notice of serum iron and saturation than TIBC.

Your ferritin did then, and does now, suggest that this needs raising and you shouldn't supplement iron when serum iron and saturation are already at good or high levels because it will take them too high and too much iron is as bad as too little. So the way to go is try to raise ferritin by diet. Pennyannie's suggestion of the chicken livers is excellent, and you can can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet

bda.uk.com/resource/iron-ri...

everydayhealth.com/pictures...

I would certainly do another iron panel though, Medichecks do a fingeprick home iron test which is the full iron panel plus CRP for £39 less the usual 10% permanent discount.

Kimkat profile image
Kimkat in reply to SeasideSusie

Sorry for the late reply also, busy day today. Yes I was supplementing iron at the time of my last test and I’m going to order new tests. I’ve found a private endo that seems to tick all of the boxes so I want to collate everything before I make an appointment with her. Again thank you for your fantastic advice, I do try to eat pate, dark chocolate etc so I’m hoping for an improvement this time. I’ll let you know how it goes.

SlowDragon profile image
SlowDragonAdministrator in reply to Kimkat

Will get SeasideSusie to take a look

Kimkat profile image
Kimkat in reply to SlowDragon

I have reduced my B12, thanks fir the input on B vitamins, I’ll look into that asap

SlowDragon profile image
SlowDragonAdministrator in reply to Kimkat

Clearly thyroid levels are very poor

Anyone on levothyroxine should have TSH under 2

Many will have TSH under one when adequately treated

Ft4 only 45% through range

Ft3 only 19% through range

Helpful calculator for working out percentage through range

thyroid.dopiaza.org

Most people when adequately treated will have Ft4 at least 60-70% through range and Ft3 at least 50% ….often need it higher

he’s always managed to poo poo everything that I say and told me that most of my symptoms could be anything,

Of course they could. And that's the problem with hypo symptoms: they're non-specific (but I very much doubt an endo would know why!). Try asking him which is the most likely scenario: that you have ten diseases with one symptom each? Or that you have one disease with ten - or however many there are - symptoms? And if he thinks one disease, then the most obvious candidate is hypo because that has the most diverse range of symptoms - over 300 of them! Learn to do a bit of poo-pooing yourself. It's the best defense.

Also, tell him that a TSH of over 3 is far from normal! A euthyroid (normal) TSH is around 1, over two means your thyroid is struggling, and you are hypo when your TSH gets to 3. So, a TSH of over 3 when on thyroid hormone replacement (levo) means that you are very under-medicated.

Kimkat profile image
Kimkat in reply to greygoose

Just to let you know that I don’t have a thyroid now as I had Rai four years ago, I honestly think that my endo forgets this completely. I don’t even have a thyroid to stimulate so I can’t understand his logic .

greygoose profile image
greygoose in reply to Kimkat

Doesn't matter if you have a thyroid or not, the TSH is pretty much irrelevant. Nobody's thyroid works once you're on thyroid hormone replacement and get the TSH down below 1. He just has no idea what he's doing, that's all.

Kimkat profile image
Kimkat in reply to greygoose

Thank you, I’m just trying to get it right in my head so that I don’t sound like a complete idiot when we next speak. After saying that, my next appointment has been put back until July, so two cancellations in December, one in January so I have to wait until July. I have made an appointment to speak to my gp next week, hoping to get him to up my Levo, so we will see if he has the gall to go against the endos advice. By the way do you happen to know what the discount code is for Medichecks, I can’t find it.

greygoose profile image
greygoose in reply to Kimkat

I'm afraid I don't know the discount code, no, sorry.

Kimkat profile image
Kimkat in reply to greygoose

Thank you anyway I’ll contact them.

greygoose profile image
greygoose in reply to Kimkat

You're welcome. :)

Thank you GG. He has told me in the past that it’s no good quoting things to him because I have no thyroid and it’s a totally different scenario. Whatever I say he’s counteracts and it leaves me exasperated.

As you have no thyroid you are more in need of hormone than those with a thyroid. I would get a cheap blood test and if your fT3 is borderline tell him you want some liothyronine. Assuming he isn’t helpful you could write to the hospital asking to see someone with thyroid expertise, that this consultant is lacking in knowledge and not caring.

This thread might be of interest :

healthunlocked.com/thyroidu...

Kimkat profile image
Kimkat in reply to humanbean

Thank you I’ll settle down and have a good look at this

Hey there again Kimkat :

Well yes and I too can hear myself saying - here I go again :

I can't really say more than I have already.

RAI induced primary hypothyroidism is more difficult to treat - but this endo takes the biscuit and just using a TSH ???

Your feedback loop is now broken and a TSH blood test totally worthless - you haven't a thyroid to even try and stimulate.

You must be dosed and monitored on your T3 and T4 blood test results with the intention to balance both T3 and T4 at around a 1/4 ratio - T3/T4 - and high enough up in the ranges to alleviate symptoms and acceptable to the patient.

In order for the T4 to work and convert to T3 in your body you need optimal vitamins and minerals, especially those of ferritin, folate, B12 and vitamin D and RAI is known to trash vitamins and minerals.

A TSH of over 3 when on thyroid hormone replacement is not " normal " :

Nor is it normal to have taken RAI either as a pill or a drink and there is little information nor guidelines on how to treat post ingesting this toxic substance.

Yes, now is the time, it's your health, so choose wisely and concentrate on building up your core strength vitamins and minerals to help with the conversion of which ever thyroid hormone replacement you choose to go forward with.

Alternatively, if all else fails, you could try DIY as there is only one way to go from here, and it is with somebody else in the driving seat.

P.S. How are your eyes and nose ?

Kimkat profile image
Kimkat in reply to pennyannie

Yes again it’s looking more and more as if ‘I need to sort myself out’, just going through a list of private Endos, so fingers crossed for me. As for my eyes, I am keeping on top of that problem but it’s reared it’s head again in the past few weeks as I’ve managed to contract covid :/ which seems to have exacerbated it and my nasal problem is still just that but at least I’m under the ent again and he does seem to be taking me a bit more seriously now and thank you for asking.

SlowDragon profile image
SlowDragonAdministrator in reply to Kimkat

Nasal problem?

Post nasal drip common if developed lactose intolerance

Kimkat profile image
Kimkat in reply to SlowDragon

I was diagnosed with PND over 18 years ago, to my knowledge I wasn’t having any thyroid issues then but after saying that I may have been, as I wasn’t as aware of the way the nhs treat thyroid patients or test bloods. I don’t have lactose issues but I do have sinus problems now.

SlowDragon profile image
SlowDragonAdministrator in reply to Kimkat

Then you may find you are gluten intolerant/lactose intolerant

Are you on strictly gluten free diet or tried it

Lactose intolerance can develop when gluten intolerant and often improves after a year or so on gluten free diet

coeliac.org.uk/information-...

Lactose intolerance is very common with Hashimoto's and Graves’ disease

ncbi.nlm.nih.gov/pubmed/240...

Lactose intolerance was diagnosed in 75.9 % of the patients with HT

read.qxmd.com/read/24796930...

These findings show that lactose intolerance significantly increased the need for oral T4 in hypothyroid patients.

How to diagnose

nhs.uk/conditions/lactose-i...

Best way is to try cutting lactose out

Kimkat profile image
Kimkat in reply to SlowDragon

I don’t think I’m coeliac I very rarely have any problems in the tummy department, I eat a very balanced diet but is their a test you can have for coeliac or lactose intolerance?

SlowDragon profile image
SlowDragonAdministrator in reply to Kimkat

Extremely common to develop food intolerances when hypothyroid due to leaky gut

You don’t need any obvious gut issues

ALWAYS test for coeliac BEFORE trialing strictly gluten free diet

Request GP run test

nhs.uk/conditions/coeliac-d...

Assuming coeliac test is negative it’s always worth trying strictly gluten free diet….minimum 3-6 months

NHS link re lactose

nhs.uk/conditions/lactose-i...

pennyannie profile image
pennyannie in reply to Kimkat

Just reading through further comments :

You need to get your ferritin up to at least 70 :

I had a ferritin of 22/23 when I started out researching for myself and everywhere I read suggested that ferritin needed to be over 70 to enable any form o thyroid hormone conversion to work well.

I now find I feel at my best with a ferritin at around 100 : folate at around 20 : active B12 at around 75+ ( serum B12 500 ++) and vitamin D at around 100 :

Asda sell little tubs of frozen chicken livers :

They are very clean and mild to taste - just defrost 1 tub a week and flash fry in a little olive oil for around 10 minutes and then whizz down into a pate and store in an old jam jar in the fridge. If the mixture is a bit dry add some mayo :

I take a spoonful every morning and with a dollop of Hellmans this spoonful of medicine slides down very well and much " kinder " on my stomach than some iron tablets.

I'm so sorry you are going through this.

I know this isn't helpful, but he's just a misogynistic/sadistic pig, and you need to discharge yourself from his 'care'. He will never make you well.

Kimkat profile image
Kimkat in reply to nellie237

Yes you’re right but I do get a bit panicky that if I cause too much of a stir I’ll end up with no support at all. I know it’s the wrong attitude but it does concern me.

nellie237 profile image
nellie237 in reply to Kimkat

I agree you're in a bit of a tough spot there, as even if your GP thinks/knows you should have an increase they can't/won't go against Consultant advice.

I think in your shoes I'd ask your GP to refer you to somebody else (you'll never know unless you ask), and if they are unwilling to do so, ask them what processes you need to go through to make this happen. You should have had a dose increase 9 months ago.

How to get more pills- oh how stupid, I opened the bathroom cabinet and they jumped out and fell in the loo...

I dont have a bathroom cabinet, but they dont know that... :)

Kimkat profile image
Kimkat in reply to serenfach

Of course 🤣

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