Impossible to get a diagnosis, don’t know what ... - Thyroid UK

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Impossible to get a diagnosis, don’t know what else I can do :(

Sakurartattoo
Sakurartattoo

Hello everyone, I’m 23 and unknowingly suffering from a LONG list of symptoms relating to an under active thyroid for years. Thyroid disorders run in the women in my family not missing a generation for 6 generations! For years I would go to the doctors explaining my symptoms and my mum would tell me to mention she has hypo and so the dr would do the thyroid function test and every time would tell me it’s normal and there’s nothing wrong. The last year everything has got much worse and after doing research and actually telling people and even clinicians they’ve all said it sounds like I have a thyroid problem but still my gp isn’t interested. After starting to get fed up I went for a blood test privately which came up as abnormal with the drs report saying I had subclinical hypothyroidism and went to my gp with the results feeling ecstatic that I finally had proof it was my thyroid, he sent an email to endo to figure out what to do with me and got the response the other day saying endo doesn’t believe the results and thinks the lab who done them are incompetent and he wants to repeat the test at their lab and want me to pay for it! And said there’s nothing wrong with me. I am coming to the end of the line with how much more I can take of this, every day it gets worse and no one wants to help me 😞 I don’t know whether to get another private test done again or try see a private GP or endo but these are all really expensive and I can’t really afford it 😞 anyone else in or been in the same position? What can I do to try get my life back? Any advice would be so very much appreciated.

40 Replies
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Are in the UK? If so could you share the lab you used and the results? Don't forget the ranges as they different from lab to lab. If you aren't in the Uk then share your readings and I'm sure people will comment.

Oh yes I’m sorry, I’m in the UK and these were my results TSH 5.72 - range 0.27 - 4.20mIU/L

T4 17.700 - range 12.00 - 22.00pmol/L

T3 7.12 - range 3.10 - 6.80pm/L

These test were done in the afternoon aswell so understand they’re highest in the morning

Hi

I can totally empathise but your T3 levels being over range while your TSH is high and free t4 mid range doesn't seem quite right

It could point to central hypothyroidism or it could actually be incorrect results as endo suggested

I've been wondering about my.medichecks results for some.time too.

(P.s. if you want people to get notifications that you've replied to them you either need to click reply under their message or you have to tag them by putting @ in front of their name and selecting their user id underneath )

P.s.s why should you have to pay for your blood tests on NHS ? If you have symptoms for it and haven't been tested and they are querying the tests you have paid for then they should order the correct tests!

Including thyroid antibodies - if you have a strong history of it that will also confirm you're likelihood to progress to hypothyroidism

In the meantime do get vitamin deficinies checked and most likely you are low in vit D folate b12 and maybe even iron. Do you have IBs type symptoms too?

Saya85 My GP surgery aren’t willing to do these tests, even though I have such a strong family history and all my symptoms point to it they’re not interested, I begged them before I did the private test to do more tests and they said even if they wanted to they can’t because their lab won’t do it.

This is what I mean aswell with paying for their test, all they want to test is the T3 and have said the others are normal and their nothing wrong with me despite all my symptoms and history, makes me feel like I’m crazy but I know I’m not :(

Their test is going to cost me a lot more than I would pay to have a full thyroid test done privately aswell! I don’t want to do their test at all.

My mum did have trouble getting diagnosed as her TSH was only slightly high and her T4 was normal, it wasn’t til she saw someone different and an endo that they tested her T3 too and that was low! Baring in mind she was only young like me when she was diagnosed so I assume all the testing has changed since then.

I actually have IBS too, was diagnosed with that years ago after having so many issues with it, also have polycystic ovaries too. I have a lymphnode in my neck removed when I was 15 due to it becoming a tumour (luckily benign) but I’ve have problems with my health ever since I was a teen but they just won’t put all of these things into 1 box and look at them together.

That's ridiculous

Strong family history suggests autoimmune thyroid problems

Yes you prob do need T3 retesting as that is the off result - it's over range which doesn't explain your symptoms

I would write to the endo and say you are unhappy with the way your case is being handled and you have already shelled out for private tests and cannot afford even more expensive ones just to pacify them.

You have a strong history of hypothyroidism in family and symptoms.yourself.

They should do a full panel thyroid themselves and if they are indeed normal then you expect further investigation as to why you are feeling as you are. You are 23 - and should not be feeling this way.

These are physical symptoms

I would optimise your vitamins in the process - especially if you have IBs SX

I would go to doctor and say if you feel it is not thyroid it may well be vit D iron and other vitamins due to your IBs.

As you need to test before supplementing some of these request the vitamins from.GP as well

If you get a dead end- ask for referral.to another endo

SlowDragon
SlowDragonAdministrator
in reply to Sakurartattoo

IBS with Hashimoto's is frequently coeliac or gluten intolerance and improves on strictly gluten free diet

PCOS and Hashimoto's are strongly linked

endocrineweb.com/profession...

verywellhealth.com/pcos-and...

pcosdiva.com/2017/09/making...

thepcosnutritionist.com/res...

vocalEK
vocalEK
in reply to SlowDragon

I developed PCOS in my early 40s, luckily well beyond my child-bearing years, but I don't believe that the name PCOS had been coined yet. For a very long time I had suspected I was hypothyroid, but doctors always told me that I wasn't, because my TSH was not above 10 IU/mL. At this time, I was told my estrogen levels were low, which explained the runaway pubic hair growth and heavy periods. Low estrogen didn't, however, explain the rest of my symptoms including severe cold intolerance, fatigue, and weight gain. It wasn't until the American Thyroid Association lowered the threshold for diagnosis of hypothyroidism that I was finally treated with levothyroxine. Coincidentally, this was also around the time that the combination estrogen/progesterone treatment for my earlier symptoms was abruptly withdrawn due to panic over the increased relative risks of heart attack and stroke seen with the Women's Health Initiative. One result was that my blood lipid levels soared. Ironically, when I went to the doctor complaining about how sick I was feeling since going off hormone replacement, they did blood tests and finally told me I had hypothyroidism. [NOW do you believe me???]

So what DOES your doctor think us wrong with you? You could try what I did when I had no joy. I said to my doctor that if there was nothing wrong with me then I must be mad and should see a psychiatrist. My doctor was happy to refer me! I didn't actually go to an appointment back in the 70's but have since learnt that the profession learn how thyroid conditions affect the mind and body so I just may have had my diagnosis quicker that way?! Otherwise you need to change doctors.

Good news - Dr Isabella Wentz - the root cause and 90 day protocol books are brilliant.

Her 9 part documentary series is brilliant which has just been re shown.

Your choices are - the conventional route - wait and wait becoming worse until your tsh is 10 for them to give you Levothyroxine which works ok for some but not all.

Or follow dr Isabella Wentz protocol, you could see a nutritionist if you can. Thus option means that you will not need to take medication.

SlowDragon
SlowDragonAdministrator

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Strongly suspect you will have high antibodies

All thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

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

Come back with new post once you have antibodies and vitamins tested

Thank you so much for such an in-depth reply! I really appreciate it! I’ve suspected I have hashimotos but GP isn’t interested in doing tests like that, definitely tempted to do the full monitoring and antibodies on medichecks as it’s a good price and they do do it really quickly

SlowDragon
SlowDragonAdministrator
in reply to Sakurartattoo

Literally thousands on here forced to test privately

Medics don't understand that with "normal" TSH, FT3 or FT4, but high thyroid antibodies we can feel extremely unwell

Your high TSH, but also high FT4 and high FT3 suggests wildly varying levels of hormones. Hashimoto's flares, where most of the time we are hypo, but sudden increasecin hormone levels (a flare) as thyroid cells breakdown and release bucket full of hormones. You might measure bloods a week later and see high TSH, low FT3 and low FT4

Low vitamin levels are extremely common with Hashimoto's. Low vitamin levels can "hide" how hypothyroid you are. You need good vitamins levels, to use thyroid hormones. Low vitamin levels is like putting the brakes on the car and wondering why the fuel gushed says petrol tank is full.....yet you can't go anywhere

Getting vitamins tested and antibodies is essential and next step

Very often with Hashimoto's we are coeliac or gluten intolerant. Changing diet can significantly improve symptoms for many

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Always do coeliac blood test first, before considering trying strictly gluten free diet

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

SlowDragon thank you so much for all the information! Wow! I went dairy free a few years ago as I’m very sensitive to it and did the same with gluten (thought I’m not strictly gluten free but mostly) I didn’t realise this can all be linked! It makes sense that every single thing I’ve had over the years all connected to this one thing! I feel like crying knowing I finally have the answer, and I will fight for the diagnosis 🤞🏽

You have been given good advice here. However I was labelled a 'difficult' case as my blood results were not as expected. Was told I should not feel that unwell. Lost 19 years of my life to debilitating hypothyroidism, on the wrong medication. Levothyroxine is no wonder drug. I have the faulty DI02 gene so cannot convert. Are your family members taking Levothyroxine well? My personal advice would be to go private. The NHS are slow and hopeless unless you get lucky. It's the luck of the draw. If you are suffering now, it will only get worse without treatment. I realise it's expensive but what price can you put on your quality of life? Instead of spending money on going out save it, ask for money for birthday and Christmas, tell them why. Sell stuff on eBay, get a second job. Maybe take out a loan. It's about £160 for your first appointment. You could take your blood results with you. However a list of symptoms and a photo of yourself when you were healthy and what you look like now can be helpful, although being so young might not be so marked. I was unrecognisable to family and friends I had not seen in 10 year's and it gets worse. My once good looks and figure dissolved before my eyes. It should never have got this far.

Just one Consultant Endocrinologist's opinion sealed my fate with the NHS. Only now with help from a wonderful NHS Cardiologist am I on the road back to health. Time is a precious commodity, don't let your prime year's be stolen by this insidious desease.

Thank you so much for your advice, I’m tempted to put it on my credit card tbh as I have enough on there, I already work 2 jobs and run a business to so definitely no option for more work! Haha whats been most frustrating is dr’s just saying I’m depressed!!! I spent a long time being depressed so know 100% I’m not, mentally/emotionally I’m fantastic apart from feeling so stressed about this and being in such a fog all the time I can’t concentrate on anything! I work for 111 and worried I will lose my job as I’ve had so much time off and already had meetings about it but told them the battle I’m having but they don’t seem to understand. This literally impairs every aspect of your life and it’s heartbreaking because all I want is to be able to feel some what healthy and live my life as I should as a 23 year old :(

SlowDragon
SlowDragonAdministrator
in reply to Sakurartattoo

Getting full Thyroid and vitamin testing is FIRST step. (Self awarded Christmas present?)

Come back with new post once you have results

Thyroid Uk has list of recommended thyroid specialists. Some are NHS (though it can be long wait)

But first step, while waiting is often to improve vitamin levels by supplementing FIRST anyway

And trying strictly gluten free diet too, if you have Hashimoto's

All this can be done while waiting to see consultant

SlowDragon I have just ordered my full function again with the antibodies 👍🏽☺️

Can you move to a different GP practice your GP sounds awful you could not do much worse quite frankly or even just a different GP?

Your case sounds so like mine and it is true that you lose years and years of what could be reasonably healthy years if treated correctly. I lost so much - education time unable to finish degrees and courses, lost any proper career, lost friends when unable to face people and suffering depression or anxiety, lost relationships, lost looks, developed thyroid eye disease. Still I survive but often think 'what if' !

Hope you are on the right treatment now.

Ah now . . After 30 + years of being okay, roughly 35-65 years (apart from the thyroid eye disease years). my TSH reading is very low which my newish doc thinks is a sign of over treatment .abd may cause heart and osteo problems. So another battle commences. Ironic that I started off feeling awful and battling to be heard and it's almost flipped to feeling fine and being told I'm not!!

SlowDragon
SlowDragonAdministrator
in reply to Catseyes235

Refuse to reduce dose based just on TSH test, that's completely inadequate

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

It's okay Thanks know the drill. Have demanded full blood tests as last two were TSH only which I didn't realise as had always been full. Just dealing with brothers recent death before do any blood tests etc. Having interesting discussions with doctor who worries whereas my regular doc says if you feel okay then that's okay. Have reduced dose by 25mcg and not sure I feel much difference now.

There is something not right here. It's not unheard of that some NHS Drs don't accept private test results - it's nonsense but there it is. But I've never heard of someone being told that therefore the NHS will rerun the tests but the patient will be charged! Not only is it unheard of, but NHS Drs are expressly prohibited from charging patients for services (except holiday vaccinations and Employment reports). Assuming you used an accredited laboratory the only argument he might have is that you presumably used finger prick testing and not a veinous draw, but if he doesn't like that, then the answer is to redo them within the NHS. There can be a situation where odd results can be returned because you supplement with biotin in some form, either on its own or in a multi vit, but if that's not the case, your results need further investigation by your GP or a referral to an Endo. You could suggest that your GP contacts a different Endo for a different opinion. It may be that you have to formally complain - contact your PALS service for a chat about your Endo experience.

SeasideSusie
SeasideSusieAdministrator

Sakurartattoo

TSH 5.72 - range 0.27 - 4.20mIU/L

T4 17.700 - range 12.00 - 22.00pmol/L

T3 7.12 - range 3.10 - 6.80pm/L

These test were done in the afternoon aswell so understand they’re highest in the morning

It's TSH that's highest in the morning. For a diagnosis of hypothyroidism NHS doctors generally wait until THS reaches 10. So what you need is to get your TSH higher, and to do that you need to do your test as early as possible in the morning, no later than 9am.

Your current TSH does suggest subclinical hypothyroidism, but your FT4 is where one would expect to see it in a healthy person, and your FT3 is over range which is rather strange considering the other results.

Did you only have TSH/FT4/FT3 done? Did you not do the full thyroid panel to include antibodies? Or better still the Thyroid UltraVit test to include the full thyroid panel plus the 4 important vitamins?

Do you take a B Complex containing Biotin, or a Biotin supplement?

As MaisieGray has already mentioned, your doctor can't charge you for blood tests done with the NHS, but your GP wont be able to get FT3 tested, and it's unlikely you'll get thyroid antibodies tested with your GP unless he thinks there's a very good reason, then it will only be one not both.

Personally, I would re-run the private test and do either Medichecks Thyroid UltraVit or Blue Horizon Thyroid Plus Eleven, and make sure you do it very early in the morning, fast overnight from previous evening meal/supper, and drink water only until after the test. And if you do take biotin either as a stand alone supplement or in a B Complex, leave it off for 3-5 days before the test.

Thank you all so much for the replies! Read so many stories of people struggling desperately with this and getting worse.

My mum has hypo, the auntie has hyper, cousin is hypo, my nan had hyper, her sister had hypo, her mum had hypo and don’t know past there but it’s not missed a single generation as far as I’m aware, no idea if anyone has been diagnosed with hashis at all but I know my mum hasn’t. I have piled on over 6 stone in the last 3 years and it won’t budge at all no matter what I do and I used to be a fitness fanatic but I barely have the energy to get up anymore let alone go to the gym, I eat healthily, have tried numerous diets and nothing works. My hands and feet are constantly freezing, I feel the cold terribly to the point my OH will be in shorts and I’ll be wrapped up with the heating in full as I’m freezing cold. These are just some of the things I feel every single day and just can’t handle it anymore, it’s got so much worse in the last year and I’ve also had 2 miscarriages :(

Definitely think I’ll do the blood test with medichecks to test all again and the anitbodies. I don’t take any supplements at the moment but my OH got me some magnesium and selenium as he found online they can help with the symptoms and the “be your own thyroid advocate” book which has been good to read.

Just getting emotional and feel like I’m being neglected medically at this point 😞

My daughter had exactly the same problem, our family history of hashis is vast and her THS was slowly creeping up, she was getting worse we could all see her literally slowing down. But her GP kept saying she was fine. She started in desperation to take some of my T3, but then had to stop taking it as she really needed a diagnosis. We tried a private dr that cost a fortune and he just went with the nhs guidelines. Then did a medichecks blood test. She drew her own bloods at 3am and finally her THS went from 4.8 to 8.9 armed with that and the fact she had just miscarried. She went back to her GP and made a very persuasive case for a trial Of Levo, she is currently on 75 mcg Levo and 10mcg of liothyronine (from me) it took two years to get this far, relatively short in terms of a hashis diagnosis. Knowledge and knowing when to do the blood draw helped, I have hashis, so do mum dad brother nieces nephews grandparents and aunties, and now both my daughters have been diagnosed, i have to say with both daughters it took nearly two years, it was pretty much two years of a constant fight with the GP’s, both tested positive for TPO antibodies. For my diagnosis 20 years ago, it took 10 years of symptoms that I was really aware of, never do a blood draw in the afternoon. It gives them the ammo to say you are fine, and then they won’t repeat the bloods for months leaving you in limbo. I said to my daughter when she had her private consult “if they want to do bloods, don’t” make some excuse as her app was 2 o’clock. Don’t give up keep on fighting you will get there eventually.

With your family history it's a crime GPnis not taking this seriously. That kind of weight gain and unable to lose is an obvious sign. Not to mention miscarriages. Don't get pregnant until your thyroid is sorted. Don't take antidepressants as they make you fat, beware it's an NHS staple when they refuse to believe you or can't be bothered. I am assuming that your T3 result was Free T3. Not just T3. It's the Free T3 level that matters most regarding brain fog and weight issues.

I don’t know how else I can stress my history to them, they don’t seem to listen :( it’s impossible. And my GP is the nicest in the surgery, I know I’d et no where with the others.

The T3 test was free T3 yeah I don’t know what the hospital would test either T3 or free t3, I don’t wanna do their test tbh :(

I am no expert but given your hypo hyper family history you could have an unstable thyroid this happened to me. You need to find out if you have Hashimtos Antibodies. GPs are not qualified to diagnose Endocrinology issues. You have a right to insist on a referral to NHS Endocrinologist but you need to ask the forum for recommendations. It will take 3 to 6 months wait, then same between appointments. You'll need a good one given your blood results. There is something called Reverse T3 they need to test for. Privately you will get up to date, speedy resolution. With the NHS it's like banging your head against a brick wall I know. You get what you pay for in this world I am afraid. There is another hormone called T2 which they never test for NHS. Recently they have found T2 has a profound effect on metabolic rate. NHS will tell you there is no evidence. Stressing will make you worse, so will fasting strict diet. Just eat clean, cook everything from scratch so you know what is in it. Don't go mad exercising, just a daily walk for now. wish you well. If I were Santa I would pop an appointment in your stocking! Sadly I am only human......

Private testing companies don't have their own labs. They get the customers and have contracts with various laboratories around the country. If you contacted the company that did your test and provided information to allow them to identify you and your order, you could ask them which laboratory did the testing.

NHS laboratories do quite a lot of private work I believe. So your endo saying that the lab were incompetent could backfire on him if they turn out to be a well-known private one or an NHS one. I think the incompetent person here is the endo - he obviously can't explain the results you got and decided to insult the lab.

humanbean the lab that done my test was the county pathology lab in Surrey.

I did speak to the company before and they said that their lab is UKAS accredited just as much as any their lab in the UK including NHS ones, so they didn’t understand why the endo was being difficult and gave me a free doctors report on the results, all the dr said was it looks like I have subclinical hypo but my T3 is unusual so would benefit from further testing.

From what I’ve just looked up I think they actually are the labratory for the royal county hospital Surrey which is an NHS hospital as well as Nuffield.

It would have been nice if you had known this before you saw the endo - but it is always easy to be wise after the event. (I'm not blaming you! I have never known the lab that tested any of my blood privately either, when it mattered.) Unfortunately, it might be difficult to get the endo to pay attention now, but if you wanted to you could write to him and enclose a copy of both the results and the doctor's report. (Keep the originals!)

humanbean I never actually saw the endo, my GP sent him an email and his response was that the lab were incompetent basically and to repeat the T3 as the rest are fine. I’ll definitely be prepared for next time! Thank you :)

Just to add that in fertile women the TSH should not be above 2.5 mIU/L

Many labs in mainland Europe have already corrected the normal range accordingly. When my TSH level was 3.5 I thought I was going to die - it felt like I was shutting down, always freezing and exhausted, couldn’t keep up a conversation due to brain fog, horrid periods etc.

When I did a private blood test my GP said to use his nurse for the blood draw. He was happy to do this as I was having to pay , due to not be able to test T3 on the NHS. I used Blue Horizon. I also used one of the recommended Thyroid UK Endo's. One of the best things I did. He certainly recognised I was ill. In fact now being tested for rare disease by top London Endo. Don't give up. Ask for help. Contact your local Health Authority and /or your M.P. The NHS is struggling Many are going private and they too are now struggling to cope

It is at times like this that I think what a load of utter incompetents you have seen - you could buy some NDT self treat and soon be better. That’s what I did, whereas those idiots nearly killed me.

I have had a quick read through this post and although you have had a lot of good replies there is not an explanation of the high incidence of thyroid problems in your family.

People who get Hashimoto's often have family members who have thyroid disease or other autoimmune diseases, suggesting a genetic component. However your family seem to have a dominant genetic disorder which requires only one parent to pass it down.

TSH is not a thyroid hormone. It is produced by the pituitary gland and travels in the blood to the thyroid gland where it signals to the thyroid gland to produce more thyroid hormones. Your TSH is above the normal range which generally indicates hypothyroidism.

T3 is the active thyroid hormone which controls the metabolism and therefore the symptoms. Your Free T3 is above the normal range, which could indicate hyperthyroidism and means that you are not hypothyroid.

Your combination of high TSH and high Free T3 is very unusual and is a strong indicator of a genetic condition: Impaired Sensitivity to Thyroid Hormone (more often known as Thyroid Hormone Resistance). It causes hypothyroid symptoms and requires very high T3 levels (often above the top of the normal range) in the body to overcome the resistance.

It is a dominant genetic condition and explains your family history of thyroid problems.

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