Advice regarding the Dr: Hello!! This forum is... - Thyroid UK

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Advice regarding the Dr

EmmaC84 profile image
31 Replies

Hello!!

This forum is such a great resource. I definitely don’t have the correct blood results for you to offer me any advice but I would like some support regarding how to approach the GP. I can’t afford a private blood test.

I have a strong family history of thyroid issues. My grandma, mum, 2 aunts, both sisters and even 2 of my toddler nieces all have an underactive thyroid. I was tested for TSH as general blood work around 10 years ago and it was 4.4 and considered normal.

Recently I’ve been struggling with a sore throat, it sometimes feels like there is a lump when I swallow and it gets sore in the evenings.

So I go back to the Gp and he did another test.

TSH 8.6 (upto 4.2 was normal) she did say I’ve no need to worry until it goes over 10

FT4 17.9 (12-22 normal)

Ferritin 67 (15-150)

Vitamin D 51 (50-150) I’ve been recommended to take a supplement, it should be much higher during summer.

So she said TSH was elevated and we’ll run them again in a years time. Also weight loss will help with fatigue. I see you all get private blood tests to find further information. I honestly can’t afford this. Do you think there is anything else the GP can do for me? I feel a bit disheartened and it also took 6 weeks to get the blood test and I was rushed off the phone when I got the results. No one has felt my throat or offered advice about that.

I think I’m going to contact the GP again. Can someone advise what else I need to ask for for a better understanding of my thyroid health?

Edit - Also b12 active 120 (37-150 normal)

I also feel stupid for not researching this before I got my results. I wasn’t prepared for that GP phone call and have so many questions after it ended.

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SlowDragon profile image
SlowDragonAdministrator

After first abnormal test with TSH over 5 you should have bloods retested in 6-8 weeks

Request new test for 2-3 months time book test for 9am (this gives highest TSH if test early morning)

Request they also test thyroid antibodies, B12, folate too at next test

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Starting levothyroxine - flow chart

gps.northcentrallondonccg.n...

Meanwhile working on improving low vitamin D

EmmaC84 profile image
EmmaC84 in reply toSlowDragon

Wow!! Thank You so much, it seems so much easier to understand when I read it like that. I’m going to read it all properly once the kids are in bed later.

I’ve never seen bradycardia listed as a symptom before. Mine has always been low and I didn’t even connect the two. Fitbit shows it goes between 45-48 when I’m in deep sleep and it’s between 50-55 resting. I’m very active but never really questions why it’s low when I’m overweight.

I’m going to push for further testing. It doesn’t look like I have a goitre but my throat isn’t quite right and there is something going on.

Thanks again.

SlowDragon profile image
SlowDragonAdministrator

Low vitamin D

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

GP will often only prescribe to bring vitamin D levels to 50nmol….Some CCG areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via NHS private testing service when supplementing

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

Another member recommended this one recently

Vitamin D with k2

amazon.co.uk/Strength-Subli...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Great article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

greygoose profile image
greygoose

Your GP is very wrong. You do need to worry long before it gets to 10, it's just that they don't want to diagnose until it gets to 10! You are technically hypo when your TSH gets to 3, so 4.2 is far from normal, even though it's the top of their unrealistic range. And, one wonders why they even have a range if they allow the level to get almost three times the top of the range before they will diagnose. It just makes a mockery of blood tests.

You already have hypo symptoms - problems with your throat and weight gain. And, losing weight, even if you could manage it (which is doubtful) it is unlikely to help with your fatigue, because that is another hypo symptom. So, your GP is either lying to you, or knows nothing about thyroid.

But, you do need your antibodies tested. As hypothyroidism seems to run in your family, it's more than likely to be autoimmune thyroiditis. So, if your antibodies are high, plus that well over-range TSH, treatment should be started immediatly. And never mind retesting in a year! You could be very ill by that time, it should be retested maximum in three months time. She just doesn't want to treat you.

EmmaC84 profile image
EmmaC84 in reply togreygoose

I feel so angry at the Gp after reading all this. It took my about 6 months to even decide to contact the Gp because I’m 2 stone overweight and paranoid they’d just blame that. I walk 15k steps Mon-Fri and workout twice a week, I know I’m trying.

I feel so grateful I’ve had some validation on here? I’m going to push for better support. Although I’m not quite sure why the GP wouldn’t know these things? I suffer with anxiety, not all the time but probably monthly and I worry that I’m worrying over nothing.

Thanks for the help, I’ve taken it all in.

greygoose profile image
greygoose in reply toEmmaC84

Because doctors are not told these things in med school. Education it thyroid matters is very bad. They only spend about one afternoon in seven years, on the whole endocrine system - which is vast! So, you can imagine how little time is spent on the thyroid, which is only a tiny part of the whole. Also, they are told that hypothyroidism is no big deal and we're all making a fuss about nothing. They just have no idea in how it can affect a patient, and are not interested in finding out.

Whatever is wrong with someone, doctors will always find one point to focus on. It might be age, or the fact that she's a new mum, and so all her symptoms are down to that. But, their favourite point of focus is weight! My neighbour sprained her ankle, and was told that if she would only lose some weight, she'd feel better! lol Funny, but not funny at all. The blame excess weight for everything - even doctors that are over-weight themselves - been there, done that, pretty much heard it all. But trying to lose weight, when you're hypo - low-calorie diets, excess exercise - can work against you, and make things worse. They just don't understand that.

Anxiety is a hypo symptom. So, no, you're not worrying about nothing, it's just the way your brain reacts to being starved of thyroid hormone.

Sparklingsunshine profile image
Sparklingsunshine in reply togreygoose

Hi

I've got an even better one, my lovely SIL is overweight and went to the GP with an ear infection. She was lectured by the locum she saw about her weight as though it had anything to do with her ears.

But get this, the locum was massively overweight herself. I don't know how my SIL refrained from pointing this out.

greygoose profile image
greygoose in reply toSparklingsunshine

I don't know how she did, either! I would have done - something ironic like 'physician, heal thyself'! lol

arTistapple profile image
arTistapple in reply togreygoose

One day I hope to be that brave.

greygoose profile image
greygoose in reply toSparklingsunshine

Oh, I've just remembered this one!

When I was in my early twenties, I started getting blurred vision, especially at night. So, trotted off for a check-up. The optician, a middle-aged man, couldn't find anything wrong. So, he said 'well, you are a big girl, aren't you, perhaps if you lost some weight...' I must have scowled, or something, because he continued 'Not that I'm saying you're unattracitive, because you aren't! In fact, I think you're lovely..." I couldn't get out of there fast enough! 🤣🤣🤣

arTistapple profile image
arTistapple in reply toEmmaC84

Been there done that. Got umpteen T-shirts. Having our problems and dealing with the fact that we are intelligent enough to be aware of what we “should be doing” it is so denigrating to hear that crap from so-called professionals. I have never been able to deal with that unfairness but I am getting better at it. After years of ill health and finally diagnosed with hypothyroidism and having what I thought was a good GP, he went and spoiled it by saying “it’s your age, it’s your weight, it’s your posture” to complaints about exercise intolerance due to muscle pain. Do they really think some patients believe this nonsense or do they think we are all lying? Yes! And most importantly they are just utterly clueless.

greygoose profile image
greygoose in reply toarTistapple

Oh, most of them are clueless, yes. That's for certain. And when they hand you these weird 'explanations', they're obviously making it up as they go along. Just look at their eyes, you can tell. But, also, they do believe that all patients are stupid, and can't possibly know anything because they haven't been to med school. I'm always tempted to say, well, going to med school didn't do you much good, did it! lol

And, of course, it's always easier to blame the patient to cover up your own ignorance - they deflect it all back on us so that we don't dwell on their short-comings. Once you've sussed their little psychological tricks, it's difficult to believe anything they say!

arTistapple profile image
arTistapple in reply togreygoose

Unfortunately you are right on the money!

SlowDragon profile image
SlowDragonAdministrator

With two blood tests where TSH is over 5, (and if raised thyroid antibodies) and symptoms…..you should be started on levothyroxine

Standard starter dose of levothyroxine is 50mcg

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

Most people when adequately treated will have TSH around or under one. Most important results are always Ft3 followed by Ft4. Ft3 at least 50-60% through range minimum

SlowDragon profile image
SlowDragonAdministrator

Good idea to gather up evidence of low heart rate to show GP

Fitbit….you can usually print off weekly summaries or graphs

List of hypothyroid symptoms here - tick all that apply and show GP

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

EmmaC84 profile image
EmmaC84 in reply toSlowDragon

Good idea, I’m sure I can pull a report and attach it.

I wish I could have a real life appointment but I guess the good thing about online consults is you can prepare ahead of time.

SlowDragon profile image
SlowDragonAdministrator in reply toEmmaC84

Yes….can be helpful

Get all your evidence together and email to GP ahead of appointment

SlowDragon profile image
SlowDragonAdministrator in reply toEmmaC84

Make sure to say to GP that your Grandmother, mother, two aunts, both sisters and a young niece are all diagnosed as hypothyroid.

That you understand this is likely autoimmune….and can GP please include test for TPO thyroid antibodies at next test for autoimmune hypothyroidism

EmmaC84 profile image
EmmaC84 in reply toSlowDragon

hello, I hope you don’t mind me asking another question. Your knowledge is fantastic and my gps surgery couldn’t answer my question. My 2nd blood test is tomorrow morning. Should I fast before hand? Does that effect the result at all?

SlowDragon profile image
SlowDragonAdministrator in reply toEmmaC84

it might …..just eat as normal this evening

what time is your test?

But only drink water between waking up and blood test

Take a snack with you to eat after ….so you don’t feel faint

You need

TSH, Ft4 and Ft3 tested

Both thyroid antibodies for autoimmune thyroid disease (Hashimoto’s )

Vitamin D, folate, ferritin and B12 tested too

Highly unlikely to get them all …..but see what you get first

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

come back with new post once you get results

EmmaC84 profile image
EmmaC84 in reply toSlowDragon

9.40. I’m okay with fasting, no problem.

It looks to include a lot actually. Including a few other tests kidneys/cortisol/tpo antibodies, fbc, lipids…so we’ll know more this time.

SlowDragon profile image
SlowDragonAdministrator in reply toEmmaC84

great 👍😀

humanbean profile image
humanbean

I would suggest that you don't mention "Hashimoto's Thyroiditis" or "Ord's Thyroiditis" to a GP in the UK.

They refer to, and recognise only, "autoimmune thyroid disease" or "autoimmune thyroiditis".

People referring to Hashi's or Ord's have been given some sarcastic responses about "too much reading on Dr Google" or similar put downs.

DippyDame profile image
DippyDame

What a rediculous and ill informed diagnosis!!

Yes you are hypothyroid and that needs to be acknowleged asap.....to expect you to wait another year proves how little your medic knows. To be fair they are badly educated in all things thyroid, so they rely on what appears on their computer screens as NHS guidance. That is flawed!

TSH 8.6 (upto 4.2 was normal) she did say I’ve no need to

worry until it goes over 10

TSH is a pituitary not a thyroid hormone it reflects the overall level of thyroid hormone in the blood....it does not measure the level of each free thyroid hormone.....FT4 AND FT3

FT3 is the active thyroid hormone and for good health it must saturate almost every cell in the body.

Low FT3 = poor health

"Normal" is a misleading term and only means it sits within the reference range... which has been quoted in research as being too wide!

The test was originally devised as a diagnostic test for hypothyroidism....not for level of medication.

Without medication we aim for TSH 2 as euthyroid

With medication ...TSH 1 or under

At TSH 8.6 it is little wonder you feel under par

See links below

FT4 17.9 (12-22 normal)

On the face of it this looks ok but combined with the high TSH a problem is revealed!

High TSH = low hormone level

Your GP is not joining up the dots!

If FT3 is tested it will likely be too low

Your T4 to T3 conversion may be poor

High FT4 with low FT3 indicates poor conversion

To support conversion vit D, vit B12, folate and ferritin must be optimal

That assured and poor conversion remaining you may need a little T3

But....I'm getting ahead of things right now....just showing that there are answers to your current challenging health issues

You need to find the exact point within each ref range....FT4 and FT3... where you feel well.

You have already been given excellent advice so rather than ranting further I'll just add a couple of links that you might find helpful as you build up a case before approaching your GP again....soon!

Keep those notes as concise as possible to encourage the GP to carefully read them

The less confident ones don't like to think they are being told something by a patient and are often reluctant to listen and learn!!

Good luck....we're all here for you!

originalText

originalText

"Time for a reassessment of the treatment of hypothyroidism"

John E. M. Midgley, Anthony D. Toft, Rolf Larisch, Johannes W. Dietrich & Rudolf Hoermann

The authors are world renowned in their field so reliable!!

EmmaC84 profile image
EmmaC84

Thank you for all the advice DippyDame humanbean SlowDragon greygoose

I will get some info together and request further tests. My health has been driving me crazy for a little while and building the confidence to ask the GP for help and being told to lose weight was a bit of a blow when I could see things didn’t add up. I’ll push for more and hopefully detailed results will give a clearer picture of what is happening.

EmmaC84 profile image
EmmaC84 in reply toEmmaC84

I also have 17 symptoms from that list, many of which I didn’t realise had a connection with thyroid.

Sparklingsunshine profile image
Sparklingsunshine in reply toEmmaC84

Hi

Is there another GP at the practice you could see? I've found GP's greatly vary in quality.

HowNowWhatNow profile image
HowNowWhatNow

Can anyone reading specifically comment on thyroid issues and throat symptoms, please?

Am interested to know more about what this can be.

Zazbag profile image
Zazbag

I experienced debilitating symptoms when my TSH was more than about 4 and I started treatment when it was 6 (my T4 was abnormally low at a TSH of 6). If you're having symptoms then the NICE guidance says you should be given a trial of levothyroxine even if your TSH is below 10 (but above 4.2).

schrodinger profile image
schrodinger

If you need it here is a link to NICE guidelines nice.org.uk/guidance/ng145/...

EmmaC84 profile image
EmmaC84

I spoke to another Dr today. He was very nice actually, he said he has a strong interest in thyroid health. With my family history of thyroid problems as well as PCOS I do need another blood test and that is booked in Thursday 10.30 with the nurse, I also need blood pressure/height/weight/urine sample. So let’s see….I do feel more heard this time.

I can see the results online before speaking to the Dr, which is good for me. I can prepare any questions prior to the call.

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