A couple of years ago, I was diagnosed with Hashimoto thyroiditis but back then, due to my age and lack of symptoms, I was not advised to start any therapy.
Over the past years, I have become symptomatic, I have been feeling unwell. I am 30 years old and planning to have children in a few years. I went to see my GP a couple of times, I had several blood tests, but in spite of the repeated requests, the lab refuses to test for antibodies based on normal TSH levels.
I have blood test results from the last 5 years (from Hungary - my home country) showing highly elevated levels of thyroid antibodies (in 2010 - 4 times; 2012 - 12 times and in December 2014 -16 times the reference value) with normal TSH, T3 and T4, but as the reports are not from the UK, my GP doesn't accept them and refuses to refer me to a specialist.
I am a medical doctor myself, I have a good understanding of this condition, but sadly my GP does not. I feel absolutely hopeless and I do not know how to break this vicious circle. They do not accept my results from Hungary, but at the same time they refuse testing my blood for anti-TPO based on having 'normal' thyroid function.
I was advised to have the blood test done in a private hospital (£250.00), which I find ridiculous as I have the diagnosis already, and even recent test results.
I don't know if I should pay for the blood test or rather go and see a specialist privately and see what she/he says. This situation is just so frustrating.
I would very much appreciate any advice.
Written by
ikl85
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There are serious problems in the primary care system in the UK. Regardless of profession, all patients should be listened to and cared for. It's clearly not the case. One of the doctors at my surgery was telling me with a sarcastic smile on his face that everything is fine with my thyroid gland (he didn't even look at my previous blood test results, diagnosis, and he cared even less about my symptoms).
Complete arrogance I am afraid. These people should be sacked ! What are they so afraid of ? I live in Greece and have experienced likewise. Back in 2007 a GP in the UK refused to look at the tests my daughter had done here - including a scan ! He declared her 'normal ' after further testing of his own and that it was in her head - she consulted a Private Endo. A FNA revealed she had cancer. She is now battling other cancers.
May I suggest the best thing is to have a Private Test done through Thyroid UK. The information is on their main website - thyroiduk.org - they will accompany the results with a report which you can then show your GP. Blue Horizon being one and Genova Diagnostics. People here will also help with their experiences and knowledge.
When I was diagnosed here in 2005 - the TSH - FT4 - FT3 were all in range - however the anti-bodies were High. I was started on T4 and as the GP said at the time - my thyroid needed support whilst under attack. I am now T3 only.
Do you have any gut issues ? Auto-immune problems often start with an unhealthy gut. Going gluten free may help you.
Also have the following tested - B12 - Ferritin - Folate - Iron - VitD. When they are all optimal you will fell better.
Do hope you can start treatment soon. What were your thyroid results ? Could you post them for people to comment - thanks.
This is just another terrible reflection of this ridiculous health care system. I am sorry to hear you have been through this with your daughter. I hope she is in good hands now.
Thank you very much for the suggestions to have a blood test done privately. I had a look at the links and I have been in touch with Genova Diagnostics, I will order the kit today.
My results from the last 5 years:
In 2010:
TSH: 4.3 mU/ml (ref: 0.3 - 4.2)
T4: 13 pmol/l (ref: 12.0 - 22.0)
T3: 4 pmol/l (ref: 2.4 - 6.3)
anti-TPO: 221.8 IU/ml (ref: <60.0)
In 2012
TSH: 3.00 ulU/ml (ref: 0.35 - 4.94)
T4: 0.98 ng/dl (ref: 0.70 - 1.48)
T3: 2.87 pg/ml (ref: 1.71 - 4.10)
anti-TPO: 66.22 IU/ml (ref: <5.60)
In 2014
TSH: 2.16 ulU/ml (ref: 0.35 - 4.94)
T4: 0.96 ng/dl (ref: 0.70 - 1.48)
T3: 2.77 pg/ml (ref: 1.71 - 4.10)
anti-TPO: 90.99 IU/ml (ref: <5.60)
Yes, I do have gut issues, my stomach is constantly bloated. But I have other disturbing symptoms as well: increased sensitivity to cold, fatigue, dry skin, concentration problems, and decreased libido. For weeks I had terrible palpitations (extrasystoles) - maybe regardless of Hashimoto's?
I started taking vitamin D and Magnesium. I am feeling a little bit better.
After I received the blood test results, would you recommend me to find an endocrinologist privately? Or can I tell my GP who I want to be refer to so I can see someone through the NHS?
The chart shows you the dose required based on results. The measurement differs from the UK measurement - so divide your result by 2.5 if you have one !
Your FT3 always looks low in range - which could explain your symptoms. As you know every cell in the body needs T3 - it is the spark of life. Your TSH is often too high - but sadly not over the range as required before treatment. Take a look at the main Thyroid UK website - lots of information - including a page - Understanding Blood results. A TSH over 2 suggests Hypothyroidism.
When you have your private tests done - you will receive a report - that may suggest treatment. You can show this to your GP as they do use the same labs Having been on this site for several years I have not read good reports about Endocrinologists - they seem to specialise in Diabetes mostly. There are of course exceptions. Louise Warvill in Admin here will send you a list of Docs/Specialists who are thyroid friendly - you may wish to consult one of those.
Don't forget to have the following tested - B12 - Ferritin - Folate - Iron.
This post is only a personal opinion. Others may feel differently.
Having used both Genova Diagnostics and Blue Horizon Medicals for getting blood tests done, I would recommend that you use Blue Horizon rather than Genova.
Genova used to be good and reliable, but then the parent company in the US insisted that the UK division started using the same working practices as are used in the US. This doesn't work because the two markets work differently. People now find it very hard to get their results out of Genova and they can wait up to three weeks for their results. Genova now expects to work only with the medical profession, it is no longer geared up to working with private individuals hence the difficulties in getting results.
Having said all that, Genova still do the cheapest adrenal stress saliva test (there is a massive difference in price the last time I checked, but I might not be up to date), so for that one at least I would still use Genova.
The people who use this forum are in the same situation as yourself. We are untreated or under-treated or wrongly treated, and symptoms are dismissed and ignored.
It seems strange to be saying this to a doctor, but you can treat yourself. I pay for my own blood tests (without the need of a doctor's referral which cuts the cost a lot), and I purchase thyroid medication over the internet. You can ask for private messages to be sent to you about reliable websites to get medication from. But first you need to know what kind of medication you want to try - it could be levothyroxine (T4), liothyronine (T3), or NDT (natural dessicated thyroid, made out of the thyroid tissue of pigs), or a combination of these. Getting a full thyroid panel done first is essential - FT4, FT3, TSH, thyroid antibodies (TPOAb and TgAb), and Reverse T3 if possible.
Getting your antibody levels down will help a lot. This book is often highly recommended :
You also need to find out levels of some important nutrients. The list usually given is vitamin B12, vitamin D, ferritin, iron and folate. Having thyroid problems usually means that stomach acid is low, so that absorption of nutrients is drastically impaired. And another thing - having one autoimmune disease increases the risk of having others - Pernicious Anaemia is quite common for example. You need to make sure your nutrient levels are optimal rather than just anywhere in the reference range.
Going back to the subject of blood tests, I assume that you will find it easy to get someone to take blood samples for you if necessary. But there are several options, depending on which website you use for ordering tests - 1) finger prick blood tests done just through the post, 2) tests where you arrange your own blood draw and send the tubes through the post (the necessary kit and tubes and packaging are sent to you when you order), 3) getting tests done and arranged by Blue Horizon, but the blood samples are taken (and possibly tested) by one of the private hospital networks (Spire or Nuffield).
There are other things that may need to be checked and supplemented (e.g. adrenal function), but the above is enough to be going on with.
If you are planning to get pregnant, the NICE guidelines may help (although I wouldn't bet on it). Read all the bits about diagnosis/management/prescribing information for women planning to conceive, to see if it gives you any ammunition to use with your doctor :
One thing you could try of course... change your GP. First, try other GPs within your current surgery to see if they will help, then try changing your surgery. But do some research into any new surgery before changing, just in case the new one is even worse!
The problem is that in the UK the NHS guidelines are that testing for antibodies isn't done until TSH is raised. And treatment will not be started on antibodies alone - they will wait until the TSH is around 4, and that is with a sympathetic GP. They will take no notice of symptoms until your TSH reaches at least that level - the TSH level is the only sign/symptom they go by. Obviously there would be huge cost implications for the NHS/taxpayer if they treated everyone with antibodies and symptoms, and that might well be a factor (!) in the view they take.
So even if you privately test for antibodies and it shows they are still increasing, you won't be treated. That's why we're wondering what your TSH is.
How is hypo treated in Hungary? It sounds as though they may be more enlightened there. Were you on private medicine there?
"The problem is that in the UK the NHS guidelines are that testing for antibodies isn't done until TSH is raised." - That's fair enough, I understand that in the UK everything is controlled and we all have to follow strict guidelines. But when you have the diagnosis and the GP specifically request for the anti-bodies and even calls the biocehmistry lab to confirm it and they say they will do it and at the end they do not, that's ridiculous. How can a laboratory over judge a doctor's request? And yes I agree, doctors take no notice of symptoms and seem to have no empathy and willingness to help.
I agree that there would be a cost implication for the NHS if they treated everyone with antibodies and symptoms, but - in my opinion - burying their heads in the sand and waiting until people's symptoms get worse will have an even higher cost implication long-term. Just an example: the cost of anti-body testing and medication is much less than hospitalisation for miscarriages or treatment for infertility.
It's really frustrating, but unfortunately there is not much we can do.
In Hungary it's much more straight forward. Patients do not need to fight for medical interventions or for a blood test. The GPs do not try to avoid giving out referrals (just the opposite they are happy to send their patients to see a specialist).
The first time I had my thyroid function checked was in 2009, back then I had high TSH levels. I was given the option to start therapy or wait and see if my hormone levels change. A year later (just before I moved to the UK) I had another routine blood test that showed normal TSH, T3 and T4 but high anti-TPO. I was only 25 and fairly asymptomatic, so I didn't want to start a treatment.
Over the past 5 years, I have become symptomatic, I have been feeling unwell. My doctor back home suggested to start treatment, but as I live in the UK, she cannot put me on medication as it has to be monitored until the correct dose is achieved. So this is where it all began.
In Hungary, they do care, but cannot help. Here they do not care and they do not want to help.
I found this interesting article on the ThyroidUK website:
"Remember that the TSH, T4, or T3 don't reliably tell you whether you do or don't need treatment. So, if you let your doctor deny you a trial of thyroid hormone therapy because of reference range levels of these tests, you’ll be allowing him or her put your health and well-being at risk. I personally wouldn't let an uninformed doctor subject me to that."
I think everyone on this forum would agree with every word you say. The NHS' approach will end up costing the tax payer more in all sorts of ways.
There is something very wrong with the science they are relying on to claim that the TSH is the be-all and end-all. Most people on this forum would agree, I think, that symptoms precede the rise in TSH, "sometimes for years".
Either they are testing the wrong thing, and the symptoms are caused by thyroid failure which they are not detecting, or the symptoms can be caused by some underlying problem which eventually triggers the rise in thyroid antibodies and then th TSH rise - something like autoimmune gastritis, present in around 35 per cent of hypos. That goes undiagnosed and untreated too, and the antibodies are not monitored. Either way there is a massive failure in the system, and the consultant endos at the top of the system are absolutely refusing to accept that.
The situation is not helped by the fact that research at present also apparently largely does not show that treating hypo before the TSH rises sharply helps. (I think only one reliable study has shown benefit.) Why not? Is it because they undertreat at this point - or treat only with Levo, which is of limited benefit to a significant proportion?
The process of diagnosis is clearly flawed. And the treatment is flawed too. Here and in the US.
It sounds as though your GP is listening to some degree, but the lab isn't - madness. You can just test privately to move things along. I did that, and it did speed things up a bit. We all know it is crazy to have to do that, but we have to.
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Having been on this site for several years I have not read good reports about Endocrinologists - they seem to specialise in Diabetes mostly. There are of course exceptions. Louise Warvill in Admin here will send you a list of Docs/Specialists who are thyroid friendly - you may wish to consult one of those.
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