battle with my gp as tests are 'normal' in nhs ... - Thyroid UK

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battle with my gp as tests are 'normal' in nhs range yet felt awful for 6 years???

Peroxideblader
Peroxideblader

Hello I apologise if I posted some time ago as I left the group due to being told twice by my doctors I have no thyroid issues and I'm in range...

my cousins have pushed me as they and 4 family members have hypothyroidism and hashimotos...

I had private bloods done as gp refused saying I had health anxiety and basically making illnesses up!! unreal...

I took the results back to my gp who dismissed them saying their ranges didn't match nhs guidelines but did agree to test me.

my t3 was below range in the private test just in range in nhs one so they said my levels were fine..no further action.

my ferritin is very low my b12 low yet gp said ahhh we're different and low doesn't mean bad.

I had a second opinion with a different gp who just agreed with the other one that all ranges are fine. I'm making another appt to get a full thyroid test again on nhs to compare they'll have been taken 5 months apart.

sorry for the long story but I'm just asking how I can get past these patronising gps and for them to realise I'm not well at all and go off my symptoms. thank you

please note my b12 is now 213 my ferritin 12 and my folate 15 all this within 8 months between tests. plus because my t3 result was 4 and in range I've no thyroid issues so they say

35 Replies
oldestnewest

Can I suggest that you post the results of the private tests you had done, including the reference ranges. It helps to put things into perspective and give us an overview. If your problems are nutrient-related then we can suggest ways and means of treating yourself with over-the counter supplements.

low b12 is easily treatable at home. get some sublingual b12 supplements. see an endocrinologist if possible. are you experiencing goiter? were you tested for thyro-antibodies? we need more info to help. bloodwork, symptoms, and med history. know how you feel friend...there is an art in demanding respect from doctors. if you know you're not depressed never attribute anything to mental illness...its the lazy diagnosis.

Hi,

"my ferritin is very low my b12 low "

I'd suggest looking at Pernicious Anaemia Society forum on HU which has lots of info about low B12. Has GP tested you for PA?

PAS (Pernicious Anaemia Society) website

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

I am not medically trained.

shaws
shawsAdministrator

Always post your blood test results, with the ranges. This enables members to respond as best they can.

Doctors are ignorant of the disabling symptoms which used to be the priority before blood tests were introduced and doctors and endocrinologists these days only seem to look at the dots on a piece of paper and not examine patient to see how many symptoms they complain about. i.e. Tick of the following you have:-

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

It is NOT sufficient to only test the TSH and T4.

thyroiduk.org.uk/tuk/testin...

If you wish we have two private labs that do home pin-prick tests and will do those the doctor/or endo wont. Make sure you ae well-hydrated a couple of days before and if you take thyroid hormone replacements allow a gap of 24 hours between last dose and test and take afterwrds.

Ideally you need TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

GP should test B12, Vit D, iron, ferritin and folate. Everything has to be optimal.

Hi!

I'm in the same boat as you. I haven't even had a full thyroid panel done because I'm in the normal range nor do they refer me for a second opinion in spite of a long list of symptoms that all point towards hypothyroidism.

So, while I can't offer advice know that you are not the only one fighting a seemingly endless battle for a diagnosis/treatment.

shaws
shawsAdministrator
in reply to ma_floof

We have two private labs who do home pin-prick finger blood tests. One, Medichecks, has a special offer of some sort every Thursday. Blue Horizon is another good lab. If you decide to do a private test make sure you are well-hydrated a couple of days before and that arms/hands are warm on day of blood draw.

You need blood draw to be at the earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose of thyroid hormones and test and take afterwards.

TSH is highest early a.m. and drops throughout the day so early a.m. is always advisable, fasting etc etc.

thyroiduk.org.uk/tuk/testin...

ma_floof

Thanks for all your replies. I'll look out my private blood test results and attach them. my levels might be in range but they have dropped massively between last may and this Feb when I had them retested..my folate and ferritin were the worst but others varied too. I did take b12 for 4 months plus iron vit d magnesium folic acid vit c etc but felt no better and was advised to stop all supplements 4 months before I have my b12 ferritin and folate retested so it gives a true reading.

my symptoms are such a long list but the major one is the inability to get to sleep til 4 or 5am that's been nearly 6 years now I survive off 4 hours at most. plus dizziness blurred vision weight gain heart palpitations chest pains breathlessness bloated stomach with cramps mind fog depression and anxiety and severe panic attack. I am 49 exercise daily I'm slim don't drink but light smoker..my doctor just blames menopause for everuthing which some of it might be but might not. I also have reactive lymph node in my neck and in my groin so ent said..

how do I attach my results please I can't find attached??

I've attached my results the first lot thanks and mentioned the results 8 months later

From these results it's clear you are seriously undertreated. FT4 levels at the top of, or slightly above, the normal range are frequently found with patients satisfied on T4. This should be accompanied by FT3 at least in the upper half of its range. Yours is right on the bottom. Suppression of TSH by therapy is not uncommon - the TSH range for healthy people does NOT apply to those on therapy. A paper with TUK shows that "normal" body activity on T4 is only achieved in the TSH range 0.03-0.5 and as I said, some people have undetectable TSH with no ill effects.

humanbean
humanbean
in reply to diogenes

diogenes I don't think Peroxideblader is being treated at all. I would guess he/she has central / secondary hypothyroidism.

diogenes
diogenes
in reply to humanbean

That could well be so, but T4 therapy will probably have the same effects on FT4, FT3 and TSH, which in an unresponsive pituitary will be suppressed by the T4.

You have very low thyroid hormone levels. FT4 is at the bottom of the range and FT3 is below the range, it’s even marked red. How can a doctor then suggest your thyroid is fine? Because they look at your TSH and since it’s in range, you must be fine.

It’s important to understand, that if your FT4 is low, then most likely your FT3 is low too, because FT3 is made from FT4. (Your body produces a small quantity of FT3 but most of the necessary FT3 is made in your cells, from FT4.)

FT3 is the bioactive thyroid hormone, that regulates your heart rate, metabolism, body temperature etc. so it’s very important to have an optimal level of FT3.

I have a similar problem as you - my TSH is always normal but thyroid hormones are low. With FT4 at 12 and FT3 at 3 I was feeling very, very ill. I have seen many endos and they all brushed me off, suggesting I was hypochondriac, obsessive etc.

I started questioning my sanity, because they all said I was fine and should, perhaps, eat less and exercise more.

Eventually, when I found this forum and got on meds (I’m now self-medicating with NDT) I started feeling much better.

hi there please can you see my recent reply i didn't know I could reply to you until I'd already posted thank you

SeasideSusie
SeasideSusieAdministrator

Peroxideblader

You have issues with your nutrient levels.

Ferritin needs to be half way through range. Eating liver once a week (max 200g) can help raise your level.

B12 is low. According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

Check for signs of B12 deficiency here b12deficiency.info/signs-an... If you have any then list them and ask GP to test for B12 deficiency/pernicious anaemia. If you don't have any then you can supplement with sublingual methylcobalamin lozenges and also take a good B Complex containing methylfolate (not folic acid) to balance all the B vitamins.

Folate is just OK as it needs to be at least half way through it's range.

Vit D needs testing and is recommended to be 100-150nmol/L according to the Vit D Council, the Vit D Society and Grassroots Health.

As for your thyroid results, assuming undiagnosed and not on any thyroid meds, then you could possibly be looking at Central Hypothyroidism where the problem lies with the Pituiary or the Hypothalamus and is suggested by a low, normal or slightly raised TSH with a low FT4.

bestpractice.bmj.com/topics...

Click on READ MORE in the summary. Your GP will be able to access the whole article.

Also,

ncbi.nlm.nih.gov/pmc/articl...

For any future thyroid tests, always book the very first appointment of the morning, no later than 9am, and fast overnight, this gives the highest TSH which is needed for diagnosis of Primary Hypothyroidism, although I still think you should be looking at Central Hypothyroidism.

If you are on no meds, I'd say those results look like central hypothyroidism - GPs think it is rare and can't treat it. Needs endo referral. But you need one with a clue.

thanks so much..I haven't read all your posts thoroughly I will this evening..

I'm not on any medication as the doctors say I don't have a thyroid problem and that it's all in my head..my cousin suggested I had hypopitituarisn but my doctor said no.

I'm re-booked for a blood test again but it's at 3pm i can't get a morning appointment.

I have asked to be referred to an endocrinologist but gp said no they only deal with people who have a thyroid issue which they refuse to say I have.

as for b12 like I said I was taking 8 supplements including b12 but I have stopped so my blood test this time is accurate to show I have b12 deficiency and yes I have most of the low b12 symptoms and hypothyroidism symptoms.

the lady who mentioned she is the same as me as in ignored by the doctors as she's in range you say you use dessicated thyroud..did you just buy it and try it yourself? if you did can I ask where you bought it and what dose etc to try I'm so desperate and so sick of being ill

SeasideSusie
SeasideSusieAdministrator

Peroxideblader

I'm re-booked for a blood test again but it's at 3pm i can't get a morning appointment.

That time of blood test wont do you any favours. You need TSH as high as possible, which will be early morning, no later than 9am. I would cancel that appointment and wait for an early morning one.

my cousin suggested I had hypopitituarisn but my doctor said no.

Has your GP arranged any tests to rule this out? As I suggested in my other reply further up, your results could possibly suggest Central Hypothyroidism where the problem lies with the Pituitary (Secondary Hypothyroidism) or Hypothalamus (Tertiary Hypothyroidism). They can't be ruled out unless tested for.

the doctors that's 2 separate ones begrudgingly tested my thyroid as I'd had private ones earlier but they say according to my levels which are within their range there is no thyroid issue so they won't look into any hypothyroidism either primary or secondary including a problem with my pitituary...that's why I posted because I'm at a dead end they got quite mad at me last time and said I HAVE NO THYROID HEALTH PROBLEMS I'VE GOT HEALTH ANXIETY AND I'M IMAGINING ILLNESSES WHERE THERE ISN'T ANY...that's their words..so how do I proceed...

if my blood tests come back similar again they'll say again NO THYROID PROBLEMS.

my nhs results were as follows and these are all healthy and good...

ft3 4 (3.80 to 6.00)

tsh 1.5 (0.34 to 5.60)

free t4 8 ( 8 to 18)

antibodies <0.3 ( 0.00 to 9)

what does anyone think of these they are different ranges to the private test and they say they're perfect and healthy results..no further action.

SeasideSusie
SeasideSusieAdministrator
in reply to Peroxideblader

Peroxideblader

It doesn't matter what the ranges are, it's where in the range you are that matters. With your NHS results you have a normal TSH at the lower end of the range, you have FT4 right at the bottom of the range. This strongly suggests Central Hypothyroidism.

I gave you two links about this in my previous reply further up.

Take someone assertive with you to your next appointment, give the GP the link to the BMJ article and ask that s/he reads it on the computer whilst you are there. You can give the link to the other one, even print it out and take it with you. Ask for a referral to a thyroid specialist. Make sure you emphasise that as Central Hypothyroidism is uncommon, you need a thyroid specialist and not an endo who is a diabetes specialist (most of them are).

I know it's hard, they're all pigs at my surgery, but you have to fight this if you want to get anywhere. Even refuse to leave the surgery unless you get a referral if you have to. It took me 4 appointments over 5 months to get anywhere when I was having head pains, I was even told "I don't know what it is, go away and come back if it doesn't get any better". I eventually took my son into the consultation with me and only then did the GP say "Would you like some investigation, an MRI scan?" So take someone with you next time you go.

thank you i will try to find someone assertive to take when I get my next bloods back. I don't stand up for myself anymore I feel overwhelmed with there accusations of hypochondria and time wasting so I usually get nowhere but fobbed off.

I've tried showing them print outs before but they laugh or roll their eyes and won't look at them saying ...ah Dr Google just ignore him we're proper doctors.

I begged to see a specialist virtually last time but they only refer people who have genuine illnesses and apparently I haven't!!!

Please read up on Central Hypothyroidism and educate your doctor - as others have suggested. When the TSH - FT4 - FT3 are all LOW in range - then this could be the problem.

Another vote for central or secondary hypothyroidism. On the NHS test, your TSH looked all right, I won't say any more than that, but your FT4 and FT3 were right at the bottom of their ranges.

I feel for you. For forty years, after I had glandular fever, my TSH remained in the normal range, although it was rising very slowly, and FT4 and FT3 were very low in range. Levothyroxine and then NDT changed my life. Keep fighting!

thank you..I printed off the symptoms list from the UK thyroid society and I ticked about 90% of them..when I tried to show my doctor she actually laughed and said the whole world has those symptoms it's called getting older and perimenopause!!!! I'll wait for 3 weeks til my third blood test comes back then try again.

if I get nowhere am I able to dry dessicated thyroid treatment myself or is that inadvisable ( only if my doctors still say no problem with thyroid again)

Be strong and don’t let them derail you. I’ve been laughed at, threatened, brushed off, questioned about mental issues, even refused treatment - it can be tough dealing with docs. Eventually I realised that this is my body, so I must make the decision to care for it, even if I have to figure it out by myself. At first it felt very frustrating and wrong, because we are supposed to trust doctors. I trusted once, twice and by then I had had enough. How can you trust someone, that doesn’t take your concerns seriously and laughs in your face. Sometimes I think that about 95% of doctors are psychopaths.

Haha I shouldn't laugh but I so agree..my doctors are literally nasty horrid people ..to laugh at me and say I'm making illnesses up and it's just my age!! patronising or what...

I've had a very tough life and since my ability to sleeo went 6 years ago my physical and mental health has been ruined and to have doctors dismiss me after trying over and over to tell them I'm really ill is pushing me over the edge.

what dose did you start on of ndt and where did you get it..can you give me some help please

My FT3 and FT4 (and TSH) were similar to yours. My FT3 and FT4 were usually at the bottom of the ref.range or below the ref. range.

Nevertheless, the Endocrinologists, and their big boss Lead Clinician, at the leading UK Hospital that I attended which regards itself as a 'Centre of Excellence'... would repeatedly and emphatically state that my results were all normal and fine.

I am now left with little faith/trust in them because of the decades that I spent, going from pillar to post and 'consulting' incompetent General Practitioners and Hospital Clinicians.

It's a real shame that we have to put what little energy we have into scrutinising every piece of so-called 'medical' advice these people give us.

sorry to hear that it's just awful isn't it. How did you find a diagnosis and treat it in the end? thanks

I wouldn’t go in again. Write a letter to them with a copy of your results explaining simply that you believe these results and your symptoms may indicate that you have central hypothyroidism and you would like a referral to an endocrinologist. Ask for the letter to be placed on your file. I find that GPs find it harder to ignore you when you request something in writing. You also won’t have to cope with their dismissive and condescending attitude.

thank you. I'll go in for one last attempt then I'll send a letter..I will have to find a different surgery I've been with them all my life never see the same dictor and they are heartless and uncaring I need to leave if I get nowhere

hi there..I've just rang my doctors for my recent blood test results as expected all levels good no further action...!!

I'll post them below showing what they were in March and now..please can anyone tell me what you think before I take any action.

tsh was 1.52 now 1.37

t4 was 8 now.7.25

t3 was 5 now 4.2

folate was 33 now 6.1

my ferritin was 17 now 24 but just before a heavy period and I can't understand it rising as I'm feeling more weak dizzy and palpitations.

my inability to get to sleep is even worse it's 4 to 5am every night and this weekend I could barely function I had double vusion felt faint headaches and like my batteries had run flat.

does anyone know if this still points to hypothyroidism or hypopitituarisn thank you

Not many people are going to see your reply as it's considered and old post.

I've read your whole story and really feel for you and the neglect you've had from doctors.

If it was me I'd start on meds myself without waiting any longer.

You mentioned NDT. 1000 tabs will cost you about 60 quid only.

That could last you two years.

If you need sources, make a new post asking people for their sources.

If you go to Paul Robinson website, NDT section, below in comments some guy is supplying NDT directly from UK so it will be quick. And the price is reasonable. Good luck

thanks so much ....I am scared to self medicate only because my partner and friends all go off the nhs and they say I've no problem so basically put up shut up!! but in sure there's a problem maybe pitituary???

is there anyway I can make my post newer again for further info I'm not being disrespectful to you at all just more ammunition to show other people thank you x

can anyone help so I can get this read again as a new post?? thanks

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