GP is not going to treat thyroid - where to go from here

[Gardentiger]

So the background to this is I've had a few slightly raised TSH results over the years and a lot of symptoms that suggest hypothyroid, my most recent test on may was
TSH 7.51 (0.34 - 5.60mu/l)
FREE T4 9.5 (7.9 - 20 pmol/l)
Serum B12 266 (120-625ng/l)
Serum foliate 6.6ug/l
Serum ferritin 28 (11-307ug/l)

Also after discussing with GP, he got the lab to test antibodies that are 'slightly raised.' as I fall into the subclinical category, he said to get another blood test mid August and he would consider treatment.

Today I had a phone appointment as Id had a fecal test due to bowel issues, which has not shown anything sinister so it looks like IBS. He also mentioned about getting the blood test in August, and I asked if it comes out with similar results as the last test will he be treating me. He said no he wouldn't, as it would go against guidelines.

I feel like I'm at a total impasse with this GP, and know I'm going to have to change surgery. I did mention this to him and and his voice positively lit up and he said im welcome to move Gp. I'm clearly a problem patient 🙄

What I'm worried about is that if I change GP, is it going to be the same issue? I feel so dreadful all the time. I'm even considering self treatment, as I've read about natural dessicated thyroid. I'm worried about going down this path though, as it's going to get very expensive very quickly with having to get blood tests to monitor my levels. I don't really have the money to do this!

Does anyone have any tips for how to approach a new GP with the issue that will make them take me seriously? It's so hard that it's all so difficult, because I'm so crushingly exhausted all the time. I'm terrified that I will fall asleep at the wheel driving one day, I'm that tired. I'm piling on weight even though I'm eating less than ever, my feet are too puffy to get into most of my shoes and my face is puffy too.

Thank-you for reading

But buying your own thyroxine and self-medicating shouldn't be necessary! Levothyroxine costs pennies for the NHS.

Women - and it's always women - shouldn't be having to fight tooth and nail for it.

Agree to push for a referral to en endocrinologist, OP, and change your GP who sounds totally useless.

I would certainly change GP or request a second opinion.
I had very symptomatic hypothyroidism - to the point I was having to wrap myself in a blanket in the operating theatre, or my hands would be too numb with cold to intubate patients, I was permanently fatigued, and breathless and palpitating on minimal exercise though not overweight.
Fortunately my GP agreed with my diagnosis despite borderline blood tests, and started me on 50mcg of thyroxine, later increased to 75 when my clinical improvement was dramatic and obvious. I’ve been stable on 75mcg for 20 years now.

Sparemonitor sounds exactly like my GP who dismissed my thyroid symptoms for months as being postpartum depression/tiredness etc until she was on holiday and a locum finally did a blood test. My TSH was 200+ His words “you must be feeling very poorly indeed, I’m amazed you’re still standing”

I’ve also been on NDT for the last few years as thyroxine is shit. During the lockdowns last year I had to swap from my NDT to thyroxine because of supply issues from Thailand, and I was unable to walk 200m because of the pain in my back, legs etc. I was in tears, at the end of my tether, I couldn’t even sit comfortably as it hurt to rest my own arms on my body. It took a few weeks for my body to adjust and eventually I felt a bit more human but the minute I was able to get hold of NDT again I went back on that. I now have actual eyebrows again, no pain, and the energy to get to the gym.

The dismissive attitude of GPs who think they know it all is frankly sickening. People’s lives and quality of life are at stake here, listening to patients experiences rather than being blinkered and only believing what you read in a textbook 20 years ago is why so many patients are happy to shell out £100s on medicine from overseas - because it actually works.

@Chailatteplease

I had this exact same issue. Saw an endocrinologist via Bupa, who wrote to my GP and told him to treat me. Positive antibodies aren’t going anywhere, you have autoimmune thyroid disease (mine were in the thousands and GP still wouldn’t treat 🙄)

I was also willing and prepared to self treat. If you join Thyroid Patient Advocacy forum, they will help guide you.

I had to check I hadn’t written this and forgotten as this was my exact experience too! Why do so many GPs withhold thyroid treatment?

It's both reassuring and hugely disheartening to hear that others have had similar experiences. It let's me know that I'm not a hypochondriac, but it's so frustrating that women get treated like this.

I also feel really agreived that my GP clearly would prefer it if I change to a different GP. I have never been rude or angry. I have been frustrated due to symptoms and feeling like I'm the one having to come up with suggestions (I had to push for the celiac and fecal calprotectin tests)

If your à GP, you shouldn't be dismissing a patient unless they are being agressive or making you feel unsafe. Treating a patient poorly because you wish they would fuck off to another practice because they are not a straightforward case is completely unacceptable. Having yet another doctors appointment is at the very bottom of things I'd like to do, right underneath watching paint dry and having root canal. The attitude you get from some GPS is that patients with a list of symptoms are specifically trying to piss them off and make their life harder.

Sorry, but of a tangent, but it's been a depressing eye opener. If you are ill you would assume doctors would want to help. Also, if a doctor decides not to treat it would be helpful if they were open and transparent about the reasons and actually explained it, rather than assuming the patient is a moron.

Seems an example of NHS ‘gatekeeping’ to ration services/drugs.

Another NHS GP might say similar. Private GP likely to be cheaper than private consultant. Have a couple of friends with thyroid probs who saw a local private GP, had tests etc not provided on NHS, and treatment that’s helped them.

Dozer, there’s not much point rationing thyroxine, it’s cheap as chips and available as a generic - no company has a monopoly licence.

That link that sparemonitor helpfully provided does nothing to support their argument - it certainly doesn’t prove that doctors who prescribe it are “quacks” as the title would suggest.

It just says that it can be difficult to dose because of variations and that there’s no proof it works better than thyroxine.

Both of those things are true - IF YOU COMPLETELY DISMISS THE LIVED EXPERIENCE OF YOUR PATIENT. A doctor who is interested in helping you to get better would listen to your symptoms, do blood tests and accept that maybe the complexity of interactions between our hormones mean that there isn’t a one size fits all pill that will magically cure us. If you’d ever actually LISTENED to a hypo patient instead of dismissing them as greedy lazy layabouts who can’t be arsed to go the gym and live off donuts you’d learn that many of us are trying our absolute best with the tiny reserves of energy to live a good life but the bone aching exhaustion, dry skin, thin hair, visual problems, depression, anxiety, chronic pain (etc etc and bloody etc) aren’t just in our heads, they’re sadly a massive part of our lives. I’m just hoping sparemonitor isn’t my GP tbh.

I think the main reason thyroxine is ‘rationed’ is because it was prescribed in the past as a kind of weight loss drug, and caused some people to have issues because presumably they didn’t actually need it or were overmedicating on it. Sadly that now means that those who DO need it can’t get it.

Go private. My consultant fees were around £100. The NHS have recommended ranges for thyroid issues but privately they may agree that you need medication. I was put on a years treatment and after that my overactive thyroid (post birth) levelled out and I no longer take tablets. Good luck

Having looked at the qualifications of the person who runs Quackwatch (Stephen Barratt, for those who are interested) and his 'qualifications', as well as a few other areas of that site, I am led to question why a GP would think that was a good resource to get medical info from.
Surely NICE guidelines or peer reviewed articles published in a journal such as BMJ would be a better resource?
Having had fuckery going on with my thyroid for since my early 20's, which shows my issue is more likely to be related to HPA axis dysfunction, that I can not get investigated or taken seriously (have been referred to endocrinology before but on the wrong pathway by GP, which was only the start of the fuck ups that happened) I have given up trying to be taken seriously by the medical profession (not the only bad experience I've had by a long stretch).
I manage, just about and just try not to engage with Dr's as much as I can nowadays.
Pretty sure they have me down as having Munchhausens. Would love to be able to swap lives with them for a day so they can suffer the chronic insomnia, the tinnitus and ear leaks, the tingling feet, the random shock like pains that come and go, the clicking and aching joints, the IBS that goes from constipation to diarrhoea and back again, the acne, the inability to do exercise because of the pain it leads to and the constant underlying wish to be dead, as this is no life for anyone to have to live.

My bloods have always come back borderline. Subclinical hypothyroidism, Hashimoto's thyroiditis. I have been on varying doses of levothyroxine. Never felt well like others.

I battled for years with my thyroid, eventually diagnosed with Hashimotos. Ive had Gps who have told me they know nothing about the thyroid. One GP asked me why I was there and Ive also been handed questionnaire 's about depression. Nothing surprises me about GPs, oh and I forgot the Endocrinologist who refuses to see me as Levothyroxine is the treatment. Don't talk to me about bloody doctors. They get paid plenty, but don't bother them. Bitter, yes Im bloody bitter. I got absolutely no help with thyroid or menopause. I just felt I was a pest. I won't go near a doctor now. Id have to be desperate.

Harris, exactly the same as you. None of them bother and none of them care.

Those of you who have gone private, do you have anywhere/anyone that you recommend?

I have just started levothyroxine for fertility under private consultant having suffered sub-clinical symptoms of hypothyroidism for years and being told to go away by my gp. I am looking to the future post-ttc and would love to continue this medication as the improvement is noticeable!

I got my TSH down from over 5 to 3.30 through diet/supplements but it didn’t remove the worst symptoms, lightened the fatigue perhaps. Now on levo finally I feel warm, have energy, don’t ache and have stopped feeling depressed. I know the NHS won’t treat me and I don’t have the spare energy for a fight so private it is!

@Gothichouse40

Harris, exactly the same as you. None of them bother and none of them care.

The thing is gothic it's almost like they think you are a Munchausen patient. All the symptoms. It's a vicious cycle because I believe it's led on to suffering anxiety. It's crippling. One GP suggested I may have chronic depression, but I don't feel depressed.

@Futureself

Have you researched Iodine and it's role with the thyroid?. Iodine deficiency has some major side effects. A lot of supplements do not have iodine in them, as too much is a bad thing. Maybe try increasing this for a month or two, see how you feel then?

Please don't take iodine unless you know are deficient - supplementing iodine can make hypothyroidism worse if you have hashimoto's.

@sparemonitor

Treatment isn't indicated here unless the TSH is over 10 or you have symptoms that are clearly of hypothyroidism - so on the info given your GP is correct. All GPs have patients that they would like to see move to another practice......

oh and dessicated thyroid will do nothing but lighten your wallet. Don't fall for it.

Well she does have symptoms which are indicative of hypothyroidism so what's your point?

The OPs story is a common one. People becoming increasingly unwell for months if not years before their bloods are in the "right" place to receive the medication they need.

My story was similar. I was (increasingly) unwell for about 2 years before I was finally diagnosed with hypothyroidism. Saw neurologists, dermatologists, had MRIs to find the cause which to me was pretty bloody obvious (and all a complete waste of NHS money as a trial of cheap levo would have seen my symptoms resolve) as my thyroid blood test results were showing an FT4 dipping in and out of the bottom of the reference range.

In the last year, it's has transpired that actually I have a rare form of Grave's disease which causes fluctuating hormone levels (I produce both blocking and stimulating antibodies).

So I have had to wait months/years to be treated when my thyroid was initially underactive. I then had to diagnose my own Graves' disease when my thyroid went overactive as TWO doctors missed it as they didn't even bother to check my thyroid after I ended up in A&E with severe palpitations. Thankfully I have the sense, knowledge and means to order my own private blood test which showed I was severely overactive so I could then seek treatment. Not everyone is able to do this.

Since then I have been underactive again twice, and AGAIN despite my clear medical history was denied levo by two endocrinologists yet again as "it can't be your thyroid"!! Like bloody nightmare deja vu.

I now see an endocrinologist that both listens and knows what he is doing and am currently titrating up on levo for the third time and starting to feel well again.

My history is quite complex but if you delve into the Thyroid U.K. forums you can see patient after patient reporting exactly what the OP is reporting - feeling increasingly unwell with hypothyroid symptoms with positive abs tests but subclinical and being refused treatment.

The NHS guidelines direct doctors to consider a levo trial where they are symptomatic and are subclincal. Why would anyone watch someone deteriorate and be unwell without at least trialling levo to see if it resolved the symptoms?!?

The whole situation makes me so angry. The number of people suffering needlessly is shocking. This is why people turn to self-medication, it's out of sheer desperation as no-one will help them.

My poor health has completely changed me and my life in the last 6 odd years which despite feeling better I am still trying to recover from - my loss of any social life, it's severely limited how much I can work and what I can have achieve, it's meant I've been unable to do necessary work on my house and it's had an impact on my relationship.

These decisions by doctors not to even trial a possible treatment has major impacts on people's real lives. Yes it might not be the answer for everyone but it will help some. You can just go home at the end of your day. These are our lives that you are fucking with.

@Gothichouse40

I battled for years with my thyroid, eventually diagnosed with Hashimotos. Ive had Gps who have told me they know nothing about the thyroid. One GP asked me why I was there and Ive also been handed questionnaire 's about depression. Nothing surprises me about GPs, oh and I forgot the Endocrinologist who refuses to see me as Levothyroxine is the treatment. Don't talk to me about bloody doctors. They get paid plenty, but don't bother them. Bitter, yes Im bloody bitter. I got absolutely no help with thyroid or menopause. I just felt I was a pest. I won't go near a doctor now. Id have to be desperate.

this resonates so closely to my case .. the lack of care was awful.. I felt such despair..

4 years I was at my GP's practise.. various Drs... 4 years of them acknowledging my Thyroid was very low.. but lets see what happens in 6 months .. 4 years of not knowing when they were going to treat me .. just continual bloods bloods bloods..

I went Private... and they were aghast at how low it was.. I too am now on life time daily med of Levothyroxine. It has changed my life....

nice to hear others sharing their experiences 🌸🌺

OP I'd join the Thyroid U.K. forum on Health Unlocked to get some further advice. They also have a list of private GPs and endocrinologists that others have used and recommend. Plus a list of NHS endos.

I saw an AMAZING private GP who I can give you details of. She doesn't live near me so I drove a few hours to see her for my first appt and she then did appts remotely.

I also see an endocrinologist currently who is also recommend. I've seen a private endo previously who I would definitely NOT recommend (so the person who said if you pay you get what you want is incorrect, doctors cannot just prescribe anything to anyone, they'd lose their license).

Happy to PM you details of the above.

Just to add as others have said it sounds like you may have more than one thing going on here.

Also second getting your ferritin up. Can cause symptoms similar to anaemia if under 50 in women. Personally I feel absolutely horrendous if mine is under 30.

Good luck.

@ravingannie I think some GPs must just lack empathy. I cried on my last phone appointment as I'd got my hopes up that I'd be able to get treatment and the dissapointment was crushing.

I try to look at the plus side that at least I know that it's my thyroid. I sought a blood test in 2018 as my brother has just been diagnosed as hypothyroid. When I had that blood test, I asked for print outs of a few previous tests, one of which actually had an out of range TSH that hadn't been followed up on. Also on one of them my ferritin was only 8! Had I not done this, I would just be getting more and more ill with no idea what it could be. I get a copy of every blood test now, as I genuinely don't trust doctors to actually look at them properly, wich us just an insane state of affairs

@ravingannie I'd live it if you could PM the private GP details over, I am trying to avoid going private due to cost, but know that it might come to it in the end

[quote Gardentiger]@ravingannie I think some GPs must just lack empathy. I cried on my last phone appointment as I'd got my hopes up that I'd be able to get treatment and the dissapointment was crushing.

I try to look at the plus side that at least I know that it's my thyroid. I sought a blood test in 2018 as my brother has just been diagnosed as hypothyroid. When I had that blood test, I asked for print outs of a few previous tests, one of which actually had an out of range TSH that hadn't been followed up on. Also on one of them my ferritin was only 8! Had I not done this, I would just be getting more and more ill with no idea what it could be. I get a copy of every blood test now, as I genuinely don't trust doctors to actually look at them properly, wich us just an insane state of affairs[/quote]
Yes I've learnt that you need to monitor your own health, review your own blood tests, do your own research and be your own advocate. Healthcare shouldn't be like this but it appears unless you have the ability, wherewithall and confidence to do that (and ultimately funds to go private when you need to) you are stuffed basically - unless you are very lucky to stumble across a gem of a doctor accidentally. I view seeing a doctor now as seeking a medical opinion (they all have different ones!), and if I don't agree with their opinion I get another one.

I'll PM you the private GP details in a sec...

@RavingAnnie would you mind sending me the private GP details as well?

[quote Berkeys]@RavingAnnie would you mind sending me the private GP details as well?[/quote]
Done x