Thyroid issues and GPs

[jarofpickles]

I'm a GP and having read a lot of threads on here I just wanted to make a couple of comments regarding thyroid issues. There seems to be a reasonable amount of mistrust of GPs/GP bashing/misinformation.

1. I do loads and loads of thyroid function tests and I treat loads and loads of people for under and over active thyroids. I see a lot of people with the kind of non-specific symptoms I read on here and send bloods for tests (tfts as well as the other usual suspects vit b12/vit d/ferritin etc etc). I would say the vast majority of people I find to have biochemically under active thyroids are incidental findings, I.e. they are asymptomatic, and conversely those who I suspect/the pt suspects they are generally come back normal. Recently I treated someone with a TSH of several hundred and a free T4 of around 1 who had no symptoms. My point being yes there are lots of symptoms people can get with hypothyroidism, but there is very poor clinical correlation.

1. I would love to see the evidence for this "TSH should be less than 2" thing that is often said on here. Even TSH which is slightly high (subclinical hypothyroidism) often resolves. It goes up and down a lot, again, most of the time it is an incidental finding.

1. Having thyroxine when you don't need it is dangerous.

1. As a GP, I am not in control of blood tests that are done by the lab when I request TFTs. The biochemists are. I will however ring the consultant biochemist if pts are very concerned and beg them to do things like free T3s, probably because pts have been on sites like this and told they desperately need them doing. They have always been normal when I have done this. Similarly, if I sent a referral to a consultant endocrinologist about someone with a normal TSH, my referral would likely be rejected.

So in summary, I am sympathetic to your symptoms... I will investigate them... It is not necessarily in my power to do everything you are told on here to do. A lot of people have thyroid-y symptoms with a normal thyroid, I think we need to be thinking what else could be going on, rather than making new rules with regard to the biochemistry.

Thanks Blondie - will print & take today.

OP - just to add another story - my GP kept saying my Thyroid levels where not low enough to treat - but looking at the suggested boundaries rather than the actual patient. I was so ill (could not stay awake, thinning hair, all the classic symptoms, had been told it was ME) & was offered Prozac instead, (at 18). We found an amazing private doctor and within a month of building up to 125mg I was a different person.

It was a long time ago but I hope that adds to the picture.

I would hate to miss a potential diagnosis of a more serious problem due to looking only at thyroid. Ime though if thyroid results are normal there is no attempt to look at any other causes - you've got young children blah blah.
My GP says she looks at the patient's experience as well as the results, and has said how in the past that was all you would have to go on for diagnosis. (She is not old in case that makes her sound like a relic!) I have a review coming up and am worried in case my results go off to another GP instead and my dose is played around with. I feel good as it is.

Can anyone here explain to me, if NICE are saying your TSH needs to be 2.5 or under for optimum pregnancy chances, then why is that not the optimum level for someone of childbearing age?

My current TSH levels are fine as long as I'm not trying to conceive. I'm not but I also wouldn't terminate or want to miscarry should I fall pregnant again. And I know my FSH is just peachy, and am only mid 30s. What if I change my mind and decide I do want another baby? Would I be treated then? Or would I have to suffer potential miscarriages before the TSH of 2.5 is aimed for?

It all feels a bit, well you're old and on the scrap heap, just deal with it love.

Thanks Blondiemix that's really helpf

I think to say jarofpickles does her patients a disservice is grossly unfair! It's not always your thyroid. It really isn't sometimes.

I have hashimotos, diagnosed at 17 after a year of telling my gp I was ill. A teenage girl with extreme fatigue, heavy periods, and he didn't even test my iron levels. When he finally tested me I was apparently a couple of months off a coma, so yes I know what it's like to be ignored, but my TSH was off the charts and t4 very low. The bloods, although long overdue, didn't lie.

Now at 31 I've been unwell for a year with an acute episode over Christmas leading to 3 a&e visits in 48 hrs. Tsh was a little high but nothing I've not coped with before, iron, folate, B12, vit d low but nothing that should have sent me to hospital. I have been convinced it's my thyroid again. I've trawled the forums and scared myself witless, posted, and been told all doctors are useless and I need to take dessicated pigs thyroid. 6 weeks on after being referred to a gastro by my excellent GP (and thankfully having private healthcare through my employer), my 'panic attacks' I've been having for a year is in fact crohns, and in turn pernicious anaemia, a lovely suite of AI diseases so I'm hoping not to collect more of the nastier ones in the set. Proof that just looking at thyroid function is dangerous. Too much thyroxine is dangerous (tell a hyperthyroid person what you're doing and I expect they will be horrified). Many other diseases cause hypo type symptoms and if everyone read these thyroid forums we'd all be self medicating and putting ourselves at risk of heart disease. I have been let down by the health system (and I love and am proud of our NHS), and if I didn't have private health id still be waiting for a referral now (I'm still signed off sick), however it is extremely sad that so many people are so desperate for answers they are listening to these forums over the experts. Every doctor mentioned or papers quoted I found had been written by quacks who were struck off. Misunderstood geniuses I think not.

So much gp bashing goes on on these forums and there are some horror stories, but sometimes the bloods don't lie, sometimes there is other stuff going on. Jarofpickles would be doing a disservice if she didn't look at the whole picture or investigate for other things following a normal thyroid result, but that's not what she said.

I also know that since being put on combination t4/t3 in mid 20's I have not once seen a t3 result come back despite the repeated requests of whichever gp I've had at the time. That is not the gps fault.

No one said it is always your thyroid. But to assume it isn't just because a patient has an 'in range' tsh is keeping people ill.

pernicious anaemia is another disgracefullly under diagnosed illness (invisible middle aged women syndrome again?)
the links between thyroid and celiacs never seem to be explored either. perhaps if the celiacs had been treated, the autoimmune thyroid attack would never have started

interesting about chernobyl effects. welsh sheep (still?) graze/d on contaminated radioactive grass for decades

Somewhere upthread OP said that if the TFT came back normal, she would be looking for other causes of the patients symptoms.

OP has not responded to questions about what she would consider normal nor has she said what other causes she would be considering. I appreciate that this may depend on specific symptoms, but I am conscious that when I had a raised TSH and low in range FT4 and FT3, together with very low ferritin 16(15-150) and vitamin D 10 (>50) with vitamin B12 below 500 and folate in the bottom half of the reference range, I was immediately diagnosed, by a consultant endocrinologist, with CFS, told there was help available and discharged. Is this the sort of differential diagnosis OP would be looking at?

I have hypothyroidism and a vitamin D deficiency. I've also had a mc. My levo was increased by my endocrine team as soon as I became pregnant. I also have two healthy little DCs!

if you are specifically asking why we often say 'check your tsh it should be under 2', it is for a reason

a lot of people are not told their tsh
they are told 'normal' when they phone for results
naively/trustingly they believe that

it later turns out their tsh was
10 or
8 or
4.9

for example. no test for antibodies or t4 half the time

if they are given an idea of what a normal tsh could be, esp on a parenting forum stuffed full of women of child bearing age, where tsh is recommended to be under 2, then we hope they will ask for their results and enquire further if necessary rather than being fobbed off with substandard response of 'normal'

spend five minutes on a thyroid website. read of years of lives ruined. you might start to understand our perspective

of course it can be other illnesses, and wouldnt it be fabulous if the gp investigated those other possibilities too if tsh is 'normal'

maybe its fibromyalgia or cfs says gp

oh how sad. no treatment
go away.

I have an underactive thyroid, on levo. There was some trial and error after my final diagnosis (4 years of hellish exhaustion just waiting to finally "dip" to the right threshold to receive medication

According to my stats, 100mcg was too much (and I felt rough) 50mcg too little (felt rough) and 75mcg put me within range - so my first GP sent me away with that. But I still did not feel great. Hugely better. But still niggly symptoms.

Moved, changed GPs. She agreed to me trying to up the dose a tad - so 87.5mcg one day, 75 the next. Yes it is a pain (and tricky) cutting teeny pills in half. But OMG the difference in how I feel is amazing. I am me again. I do not fall asleep as soon as I sit down. A myriad of other plusses. And my levels? Still within normal range.

My GP allowed me to increase my dose due to her trusting me to listen to my body. OK checked out chemically/with a blood test too. But she listened. And didn't just say "Well you are within the range, put up with it". She let me try and get better.

It made me look at my mum. On 50mcg for decades. Yes the blood tests came back saying she was "OK". But she wasn't. She too did a trial (under her GP) of 75mcg. And again - amazing difference. She is a transformed woman. Bloods are still within range - but the higher end of "normal" rather than the lower end. And it is like she has lost 10 years of weariness.

So the "A whole bunch of symptoms could be lots of other things" fine. But if you have a medical condition that makes sense, surely listen to your patient too? If we say we are still not feeling right please don't just put it down to our age.

I had 3-4 years of ADs probably because I was just under the clinical/biomedically accepted threshold to go onto Levo. Two days after finally starting taking it I felt like my life was back. And yes it was that quick.

I disagree with GP bashing. I disagree with dismissing patients knowing their own body too.

If these patients have 'normal' TFT's and therefore pronounced to have no thyroid issues, why do they feel better once on a form of thyroid treatment? Because if the thyroid was working normally surely by starting treatment they would either have no benefit or feel worse?
How can you explain the dramatic turn around in these peoples health and quality of life?
My GP admits that he has failed me. I had to have my antibodies tested privately before I could get a diagnosis of hashimotos. Four years of my life lost because computer said no

My personal thyroid experience has not been good at all. It was only when I did my own research and paid for comprehensive (TSH, FT4, FT3, antibodies) thyroid tests and then a private doctor who switched me from thyroxine to natural desiccated thyroid and T3 (I now have a NHS Prof Endo who agrees that I need this approach) that my life begun to turn around. Previously, my thyroid TSH and FT4 tests where within range and I was on thyroxine. However, I had many symptoms which where apparently not related to hypothyroidism but left me being cared for by my family due to severe pain, weakness and cognitive problems. I also lost a good job and some people end up with miscarriages, relationship and mental health (sometimes severe) problems if not treated properly. There are approx. 300,000 people in the UK who are suffering unnecessarily due to poor testing, diagnosis and treatment.

tpauk.com/forum/content.php?1542-ENDOCRINOLOGY-FAILURES-CAUSING-HARM-TO-PATIENTS-WITH-SYMPTOMS-OF-HYPOTHYROIDISM

Please sign and share the petition below to help give thyroid patients a choice re medication.

epetitions.direct.gov.uk/petitions/64191

The following link explains some of the points re thyroid testing.
www.thyroiduk.org.uk/tuk/conference_2014/Dr-John-Midgely-History-of-Thyroid-Testing.pdf

I am reading this with interest. The endocrinologist I saw says that I should always aim to be aiming for a TSH of 1 . funnily enough Im sitting here feeling achy, tired and freezing cold and so i really think i need to be rechecked (Im on 100mg one day and 125mg the next). It really does amaze me how many poor women are suffering. I understand that GPs have a lot of patients to see but I think they should be referring patients onto specialists who can spend time getting the dosages right.

Lloydjam, you highlight the issue. There is a difference between those of us who have a hypo diagnosis but can't quite get the levels right; and those who fit within the "normal" reference range, but who have symptoms and want to get to the bottom of those. It must be difficult enough for GPs to send on those like us who might be manageable, if not optimised, within a primary care setting - presumably lots of endos would just ask why are you sending me this non complicated case.

And I imagine it would be even harder to justify expending resources on those who don't fit the definition of abnormal at all.

I don't know what the answer is. But I think we would get a long way by someone listening properly to those women and working with them somehow.

Interesting about Chernobyl. I am Welsh, and out of my three closest school friends and I , only one of us has a functioning thyroid. Friend 1 and I bothe have Hashimoto's, and Friend 2 had a thyroidectomy due to thyroid cancer that was specifically linked to Chernobyl- she was part of a cluster apparently, and had the cancer at an unusually young age (late 20s). My mother is hypothyroid too.

I just think thyroid issues are very poorly managed in the UK at the moment. Since becoming pregnant it's been even more apparent, when I conceived and notified my doctor I asked him whether i needed to increase my dose (as I was advised on MN to do so).

He told me no and that the Endocrinologist would advise me. That was the first error, I phoned for a different doctor a few weeks later when I started to feel terrible. The next doctor told me that I should have immediately increased my dose and that I wouldn't be seeing the Endocrinologist for a while.

Since then I've been having my blood tested every 4 -6 weeks and my dose increased by my GP. After waiting for what I believe is an abnormally long time I saw an Endocrinologist at around 24 weeks. By this point why bother? Surely the damage in development is done? Over half way through the pregnancy. Anyway I was told I needed to get my TSH down to 2 and that it was currently 8. The following week I spoke to my GP who also did their own blood tests, they increased my dose and were waiting for the report from the Endocrinologist still but seemed to know that guidelines stated I should be aiming for a TSH of 2. Every time I've seen a GP they have had different view's of the levels I should be aiming for, the amount of weeks between dosage changes and blood tests.

On top of all this, before I actually got pregnant I was having problems with eating gluten. When I eat gluten/wheat (I haven't narrowed it down yet) my throat is sore and I get bloated. I had tests for gluten problems which came back negative, so I researched myself and found huge links between my Hashimoto condition and Gluten issues.

When I spoke to my GP, they didn't know anything about this link and looked at me blankly.

chriskresser.com/the-gluten-thyroid-connection

Oh and I'm now on 225mcg of levothyroxine.

For anyone who is interested, this book is excellent at explaining why you may still be experiencing the symptoms with normal lab results. I actually suggest that you read it jarofpickles if you haven't already.

I wish all GP's would read it.

www.amazon.co.uk/Still-Thyroid-Symptoms-Tests-Normal-x/dp/0985690402/ref=sr_1_7?ie=UTF8&qid=1423574694&sr=8-7&keywords=thyroid#customerReviews

I've ditched gluten. Makes me feel so much better.

I think I must be very lucky with my GP.

I attended an appointment last year with terrible pain in my hands and wrists, she asked if I had been sweating at night? (yes I had)..feeling anxious (yes, so bad I would shake with fear at night).

She put me down for a blood test for all sorts of things, but at the time I didn't know that she strongly suspected Hyperthyroidism (over active).

I had never even considered this as I am not skinny and my eyes don't bulge at all (what I though someone with a Hyperthyroid looked like!)....thank goodness she is obviously switched on when it comes to Thyroid symptoms!

Results came back very overactive, she called me as so concerned.

She put me on Carbazimol, which worked really well at first. I realised what 'normal' felt like and that I had probably not been well for 20 years (40 now). I hardly ever visit the doctor, and had never been to her about my anxiety which had been going on for years, which is a shame as I might have been diagnosed earlier.

The Carbazimol worked too well after a few weeks and sent me under active, which resulted in me losing my job after falling asleep at work :(

Luckily I found a natural alternative 'Herb Pharm Thyroid Calming Compound' I replaced the Carbazimol with this, not telling my GP...my blood tests came back as Thyroid normal...GP very impressed, so I admitted I wasn't taking the Carbazimol and was taking instead a Herbal alternative...and she was delighted! Said to keep going!

I was astounded as I really thought she might be dismissive, so luckily some GPs are open minded.

Endocrinologist was not the same unfortunately...he was furious (!) saying I "can't possibly" have had anything wrong in the first place and signed me off as 'no problem with Thyroid'.....he just wouldn't listen when I said I HAVE to take the Herb Pharm compound 4 times/day and is costing me £60/month, OR I feel anxious, pounding heart, breathless, sweating at night again!

I highly recommend the Herb Pharm compounds, I also keep in stock their 'Thyroid Lifter' if I feel myself go under active, which is hardly ever.

Primallass - i think there must be a link with gluten, I have hashimotos and my DD1 has coeliac disease. To cap it all off DD2 who is 13 has also just been diagnosed with Hasimotos and has started thyroxine. I was upset to say the least that she is starting so young on thyroxine. I would be interested to know if there are any other Hashimotos mums out there with children who have the same condition.

"If these patients have 'normal' TFT's and therefore pronounced to have no thyroid issues, why do they feel better once on a form of thyroid treatment? "

That's exactly what happened to me. I was discharged by a registrar in the endo department and he wrote to my GP saying that there was no endocrine reason for my symptoms. Bloods at the time TSH 4.2(0.35-6), FT4 10 (9-26) and FT3 3.8 (2.8 -7).

Cutting to the chase, my GP started me on 75mcg levo (I asked for 100 but he bartered me down). After the first dose, the lump in my neck, which I'd for two years, which people could see from across the room, but the medical profession somehow couldn't find, disappeared, literally overnight and has not come back. Then other things started to fix. Things I didn't even realise were connected. Within three months my psoriasis was gone. Now that was a miracle! I had my first panic attack when I was 17, just after I had glandular fever, and they continued, often to a disabling level. I haven't had a single one since I started thyroxine at the age of 57. My mental health now is probably better than it has ever been.

I'm now on 150mcg, no signs of over replacement, no psoriasis, no panic attacks, anxiety or depression, no IBS.

How very NHS GP your reply is . Let me THE PATIENT tell you a little story GP. Before the birth of my third child I had lots of 'odd symptoms' one in particular was this awful dizziness (yes dizziness, not one in the list of symptoms in your little medic book that you keep next to you is it) I had hair loss. So my g.p decided to check all my bloods, one being thyroid... Everything normal, I got labelled with 'mineres disease) ... Fast forward 18 months to the birth of my third child, well well I had quite a strange pregnancy, bad bleeding in the early days that nobody seemed to be bothered about as the pregnancy was viable, terrible palpitations at the end (yes they aren't just a 'hyper' symptom DOCTOR), I gave birth to a lovely baby boy and healthy which I thank my lucky stars for... 4 months later I was producing breast milk (never breast fed doctor, not normal to produce so much that you could feed a bloody nursery), dizziness, now I had the inability to lose my pregnancy weight which is the one thing that prompted me to go to the gp and I had TO ASK them to test my thyroid after I RESEARCHED it, went for a blood test on a lovely morning in April, practically crawled into the waiting area from my car as I was so unbalanced... Later on in the afternoon I got a phone call from my g.p who had stayed after surgery had closed trying to get hold of me, ' Hi Samantha, can you get to the surgery the doctor needs to see you urgently' ... I get in and he tells me that they stopped counting my TSH at 100, my t4 was 4.4 and NOW HE NOTICED THE GOITRE that my mum had spotted WEEKS ago. I got urgent treatment of thyroxine and while it did 'dampen' the symptoms down I remain very symptomatic. We agreed to start with baby steps at 50mcg, I've quickly works up to 150mcg DUE TO SYMPTOMS, YES that's right my gp treats me with SYMPTOMS. My antibodies are off the chart, I had to research how to get better and found that I had to tell my GP to check vitamin d which was also very low. GP if you were actually in it to HELP people and not for the money then you would know that vitamin d is very important in the conversion from T4 to T3, you know that IMPORTANT hormone you f***s forgot about? So listen here you BIG PHARMA ROBOT, you are NOT a doctor, you are controlled by budgets and the big medical business. A REAL doctor wouldn't be trying to BASH us thyroid patients for complaining that we don't feel well. Oh DOCTOR do you not know the science behind it all... Let me tell you something that you NEVER learnt during your 5+ years of further education. LEVOTHYROXINE IS T4 ONLY. Your lovely healthy thyroid produces 5 hormones, yes 5! T4 is converted to t3... Oh great should work then shouldn't it? Well tell me why a healthy thyroid produces direct t3 as well as conversion in the body? Because the friggin human body is not supposed to live on conversion alone! And what about the other hormones? ... Rewind back to my past blood test, you know that tsh that fluctuates you say? Well you silly billy that's total bull crap isn't it? My tsh was always over 2 and at the top end of the range, in America and Germany I would of been treated back when all my symptoms started because anything over 3 is classed as hypo over there. I NEARLY LOST MY CHILD, I COULD OF JUST GONE IN TO A COMA AND NOT WOKEN UP IF I HADNT DEMANDED THAT BLOOD TEST! HOW DARE YOU COME ON HERE SPOUTING YOUR COMPLETE AND UTTER SHITE! You know nothing compared to what a patient, a sufferer, a solider who walks around feeling like a zombie all day knows! So GO AWAY with your stupidness. LEARN SOME PATIENT CARE AND WHILE YOUR AT IT LOOK AT THE STOP THE THYROID MADNESS WEBSITE! What a complete imbecile! p.s here's some extra advice, the reason I had breast milk was because I had a high thyroid stimulating hormone which can stimulate the prolactin hormone in your body thus leaking boobies! Took me 5 minutes to learn that! You still don't know that. How many years have you been practicing? Oh and IM LOVING NDT! Finally got my life back!