West Norfolk NHS GP useless for Hashimotos Thyroid Patients it seems!

I am sorry this will be a rant because I need to let off steam! Don't read if you are feeling pooey yourself as I don't want to upset anyone <3

Well, I met the new doctor today and as expected it was a total waste of time. My TSH was 3.0 (has been 7.8, 5.7, 2.7 up and down!) nd my antibodies had risen (sorry she wouldn't tell me what they were!), my T4 was 13. I have been having INCREASED symptoms but predictably (like the bonehead Endo I saw in July) put it all down to anxiety. She said I should think about going on Sertraline for the anxiety even though I am already having problems with insomnia and one of the main problems with Sertraline is increased insomnia! She is absolutely useless, she didn't even want to use the word 'Hashimotos' even though the last GP said it could be that. She also tried to make the intervals between TSH testing every 12 months when it clearly states that because of my high antibodies it should be every 6 months.

So, in essence I have to get on with it, managing the horrid symptoms by myself and go for my blood tests every 6 months and just wait. Its has put me off going to the GP about ANYTHING now - because unless my TSH goes above 10, they will assume it's 'just anxiety' and push anti-anxiety drugs at me.

Please, I hope to goodness there is a Government review into the NHS treatment of thyroid patients and stops telling them they are just anxious, bipolar and crazy. There is a petition about this, if you are interested in signing >>>> you.38degrees.org.uk/petiti...

I wish you all health, Hashimojo <3

28 Replies

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  • It's a pretty cr@ppy time you are having and I sympathise. My own numbers were a bit like yours back in December and I too was asked by my GP could it *just* be depression! Hell yes and no, Yes, because I feel so ill and it's getting me down and no, it's not *just* in my head.

    You need to obtain your blood test results and ranges - if your antibodies are positive there is no question as you know, you have Hashimoto's. Post them here for more support and advice.

    Others with more experience will be along to give guidance, but you might consider this approach also. After my initial GP apt, I got my results (took 3 requests) and I also did a BH thyroid 6 test. I then wrote to my GP explaining that my TSH was rising (give numbers and dates) and I was increasingly symptomatic, and that the presence of antibodies indicates that I have Hashimoto's Autoimmune Thyroiditis, and attached my private blood tests, which I had obtained through Thyroid UK (good to mention as GP might just take a look). In your shoes I would also attach thyroiduk.org.uk/tuk/testin...

    Hard as it might be, you have to be your own advocate and be as level headed about it as you can be. That's from someone who broke down in a blubbering mess first time round, but after the 'depression' comment I knew I had to up my game and approach. We shouldn't have to do this but I realised that you sort of have to coach your GP and be armed and prepared to counter what they put to you.

    I was fortunate (if you can call it that) and had high'ish antibodies (both), and got prescribed levo at 75 mcg. Though it's still early days for me (now on 100), I know I can't be complacent at any GP follow ups.

    Wishing you well and it's a great place to come for support, advice and a rant. It's a lifesaver to be 'around' people who know exactly what you are going through :)

  • (((jo)))

    You're at the 'Victor Meldrew' stage, where you can't believe it. You are going to your GP, expecting help because you're unwell and getting nowhere. It's not just Hashi sufferers but many with a thyroid condition who feel like you do :(

    Because you are somewhere within range, your GP won't treat you. If you look at the topics to the right of the screen, you will find that many can't get diagnosed ( but I have ! I can hear you say. I have Hashimoto's ! ) Ah yes but the blinders won't treat you, will they ? Because you are 'in range'.

    You have to take matters into your own hands. If you are Hashi's, many find going gluten free helps. You are entitled to your blood test results. They are yours and your doctor has no right to deny you the information within. Ask for a copy of all your test results and get into the habit of asking every time you go.

    Post your results in a new thread and you'll find lots of people happy to assist. I feel your pain...for my sixpenn'orth: don't define yourself by your condition. Better dropdeadgorgeousjo :)

  • Rapunzel you have a great way with words! The feeling of disbelief is tough, and that sense of why does no one believe me? There's a conspiracy to keep me ill.

  • Yeah it's just the worst isn't it ? At a difficult time for you I know with meno issues too. Don't let the barstewards grind you down :P

    stopthethyroidmadness.com/t... for you too jo

  • Ta for that, you can never read too much about hypo😣.

    If it hadn't been for the forum I'd never have fully realised the harm of synthetic HRT and came off pretty darn quick - funny thing was (well not really funny) but I went on it because of tiredness and libido and it did didly squat for that 😲. And hey what a surprise that's a hypo symptom, as is sinus/PND, heavy and prolonged periods etc etc. Not to mention feeling like the life has been sucked out of you and every day is groundhog.

    Time will tell how I fare with levo, so just in case I'm taking in everything about T3 NDT etc. You just never know.

    hashimojo don't give up the fight 🤕.

  • Very wise. Can take a long time to find out that t4 is ineffective.

    I'm hoping everyone is responding to the article re the 'low value' t3. We have to make ourselves heard in every way we can.

  • Do you mean this article?

    healthunlocked.com/thyroidu...

    If so, I have completed the form :) How blanket statements like 'no value' can be made is ignorant. If they had even an inkling into the destruction of people's lives this condition has, they wouldn't make these untrue sweeping statements.

    Yes, my reading of everything so far that is thyroid related suggests just when you think you've got your health back you get a wakeup call to remind you that hypo is for life :(

    But on an optimistic ending forewarned is forearmed :) and this forum reminds us we are not alone and it IS REAL.

  • Make sure they don't just give their take on the results too - the 'normal' -no further action comments (Like they did my son recently) Ask for a hard copy of the Lab report. Good to keep and refer back to to compare as your journey continues.... Good luck.

  • I enjoyed that rant 🙃

    Can you tell me the symptoms of your thyroid problem please, I wanna see if what I have is thyroid or bipolar.

    I'm not diagnosed u see, still waiting for anything to happen but this will probably make me feel like I'm getting somewhere

  • i can but suggest you take your health in your own hands and order NDT online and self treat

    my lot all do it and its not that pricey

  • Even if you are self medicating on NDT please respond to the article on 'Low value' meds which they include t3 in.

    It is all of you people, who have not been diagnosed and prescribed that, are 'invisible' to these campaigns. Because your Gp's won't diagnose, you are not going to be accounted for. The figures they are probably justifying this by are distorted through the ignorance and incompetence of the medical profession, who choose to ignore the importance of the clinical observation.

    I'd bet there are 10x more people self medicating, and/or trying to, out there, than there is being prescribed t3.

    If you haven't already. Please do.

    If we all shout loud enough maybe someone will hear us someday!

    All the best.

  • Get your vitamin D, folate, B12 &ferritin levels tested

    Extremely common with Hashimotos to have leaky gut, gluten issues and low nutrients

    If can't face going back to GP, like many of us here, you can get blood tests done privately- see private testing page at Thyroid Uk website

    NICE does recommend Hashimotos should be treated (even if TSH is below 10) if patient has symptoms

  • This seems to be a world-wide phenomenon. Am wondering if we all went to the health ombudsman at the same time, highlighting this problem individually, it might serve to bring it to the fore to be addressed openly. If there has been some sort of behind doors policy decision not to address it we need to know the reasons behind it.

  • I have been posting similarly - but ranting more with it - yesterday and today - following the 'Low value' article, which highlights the move to restrict/remove certain things/meds from prescription - this includes gluten free goods, and all sorts of things.

    But it also includes t3 - labelling it as 'low value'.

    t3 - A drug that is issued for hypothyroidism. Hypothyroidism being a 'potentially fatal' condition. Hence it is one of the few conditions, listed, which come under the Exemption certificate remit. Entitling patients to free prescriptions. How can this possibly be considered 'low value'? It is vital to some of us. It is the only alternative prescription drug to t4. Some need t4 and t3. Some are fine on t4 only. Some need t3 only, because we cannot tolerate t4 - we cannot convert and process t4.

    Recent publication of the fact that this drug has been bought out by a particular company, who have, then, massively increased the price, pricing it out of the UK market (WHY? does not make business sense to me?) making it very difficult to obtain this drug, some GP surgeries refusing to issue it and stopping issuing it??? (How do they get away with doing that?) All this has led me to start thinking why this has been allowed to happen and why is it looking like nothing is being done. Especially when, for some years now, GP's have refused to acknowledge the benefits of this drug over T4, for some. They are reluctant to refer hypothyroid patients to Endo's who can issue t3, the Endo's are somewhat reluctant to use this drug - warning of 'side-effects'. Don't all drugs have 'side-effects'? I have been on prescribed t3 only for some years and have not encountered any of the side effects. I have only positive results.

    I'm coming to the conclusion that there is more to all this, my gut tells me that the powers that be are using the NHS crisis to remove this drug from prescription (as they sidelined NDT in the past) in a very sly manner - labelling it in with other things which, unlike t3, are now more readily available, over the counter. T3 is not going to be an over-counter medicine, not when they have restricted it as they have till now. I guess they are thinking that many people will agree that gluten free should not now be prescription, they will think that t3 is something similar - unless you are hypothyroid, or work in medicine, you are unlikely to know what liothyronine is. They will not be associating t3 with a life threatening condition. One that does not have alternative therapies or medicine to help. Some of us cannot take t4.

    What I cannot understand is why. I'm thinking that this unreasonable price hike is choreographed to cause further supply issues and set this 'removal' on track. Providing a 'valid' reason to stop prescribing. (Not to those that need it to get and maintain good health.)

    I also cannot understand the real negativity towards this drug. Why would you not prescribe a proven drug that continues to be effective. Do they not want us well? Why? No-sense! Like you say what are the real reasons behind it?

  • Add to that the link that has been made between Hashimoto's and Alzheimer's / Parkinson's .... -qv the following link:

    drknews.com/hashimotos-brai...

    The government claims to be worried about the boom in Alzheimer's /dementia cases but a lot of that could possibly be prevented by giving thyroid patients access to appropriate treatment.

  • Not good news! The standing joke is that no-one gives me anything and expects me to know what I have done with it two mins later!!

    I think it goes without saying that I wouldn't be surprised if thyroid problems are not eventually proven to be the basis of many other conditions - heart/lungs and all sorts - it does effect cell after all.

  • My mum, aunt and grandmother had thyroid issues and all went on to develop Alzheimer's. I was getting the standard, 'the tests say your thyroid is fine' party line so had the tests done privately and they revealed I have Hashimoto's with a touch of Grave's so have a double whammy. Sent results to GP who consulted with the biolab at local hospital and wrote back advising the TSH and T4 levels on the tests they did were fine -totally ignoring the fact that the tests I had done agreed with that but identified the other issues too - and concluded that I am to continue to take Levothyroxine alone -as before - and they would continue to test the thyroid every year!!!

    Is there some sort of petition we could all sign (I've seen e.petitions for other causes on Facebook) to forward to health ministers /ombudsmen etc -possibly with a march and media coverage - to highlight this issue? Is this the kind of thing that 38 Degrees could champion?

  • I think there is a few petitions ongoing. CMA - investigation into Condordia and the hiked up prices for meds - T3. There is also one on 38 degrees. there are links on her somewhere.

    But I have been thinking the same regarding highlighting the unfairness of the way this 'potentially fatal' condition is mistreated and considering the seriousness of it - the undermining of patients and knowledge. They, Dr's seem to want to ignore the symptoms. Despite saying they know more now than they did 15 years ago - But actually Dr's treated the condition a lot better when treating with dessicated pigs thyroid, decades ago - they obviously knew more then than they do now!

  • It is a party line - have been there. I have had some real worries about my memory for some years now. Put it down to thyroid but now wondering - and a sister has Parkinson's. Early diagnosis, but not diagnosed with Thryroid, tho, I have thought for years that she has some form. Mam had TC, and I would say was hyperT all her life, as is her 94 year old sister, diagnosed with Hyper a few years ago, and still going! Some of my other sisters had HyerT conditions. See it in several cousins. See a lot of possible HypoT in other sisters and cousins too. And now in my son...Worry so much for him, with the ongoing ignorant approach to his symptoms - the suggestions that i am looking for symptoms in him rather than recognising them because I have experienced them! And, with what is going on with meds at the min. One hurdle after another.

  • The allopathic approach is to see symptoms and medicate in the hope of controlling or eradicating symptoms / conditions. Am coming fast to the conclusion that, while there is a place for that, it has limited application as it doesn't get to the root of the problem and address it. Have noted that, in people with auto-immune conditions, there is a tendency for them to develop further auto-immune conditions where only symptoms are being treated so have started looking sideways at functional medicine as am fed up with lurching from one autoimmune condition to another, to another. Time to get to the root of things.

  • Think many of us are of the same mind. And I don't think anyone needs a medical degree to realise that the knock on effect of this policy they seem to have, of treating symptoms only, especially when treatment is ineffective, (T4!) will only lead to increasing conditions....as more and more irreparable damaged is left to continue.

    It has seemed to me that it must be about 30-40 years since gp's actually made much effort to get to root causes! I think this attitude/policy, whatever it is, has a lot to answer for, regarding the NHS 'crisis'. We hear it is because the NHS is saturated and not enough funds but some blame has to put on the fact that illnesses, diseases and conditions have been left to 'fester' as dr-ing becomes more of a tick box exercise. Hence creating the need for repeatedly return visits to GP, and as time goes on and the underlying cause becomes less and less clear - lost in the increasing symptoms, some probably caused by further ineffective/inappropriate medicines they pass us off with. The wastage of funds must be massive.

    I apologise if I am repeating myself, ranting again, but I do feel strongly that many of us would not need t3/NDT or any of the other medicines for all the myriad of problems we now have, has our initial clinical symptoms been recognised for what they were, and treatment administered then. Rather than us having to wait for blood tests to show what the Dr's wanted to see.

    I know I am not alone, having waited 12yrs for a diagnosis, and gone through a further 20 years on ineffective t4. I knew at the age of 18/19 that I had a thyroid problem of some sorts - yet was dismissed by a so called specialist after 2 years of tests - which intermittently showed there was a problem? It took a further 10 years, who knows how many blood tests later, to get the result - for the DR!!!

    I know that there are many in much worse situations, having not been diagnoses at all, or having secured the precious 'diagnosis' cannot get treatment.

    I just don't know why they don't just let people trial a small amount of t4 - when initial symptoms appear, explain the side effects, and supervise to see if any benefit - I bet most people would even sign a 'disclaimer' if it made the Dr feel happier!

    Patients would be getting the help they most likely need, return visits would be reduced, fairly quickly to annual, and it would stop a lot of further medical problems arising for the patient. Would that be too simple?

    I think the NHS might be scared of diagnosing HypoT - because if everyone who should have a diagnosis got one, they would be entitled to free prescriptions. Maybe the numbers would bankrupt the NHS altogether!

    I don't suppose it will be long before the 'exemption certificate' we were told would be needed for life, is scrapped. (I'm thinking that they are already reducing the number of years it is valid for -could be wrong)

  • It does good to have a rant now and then to get it out of the system.

    I raised similar issues when replying to a post someone placed today regarding Ashwagandha.

    Thyroid issues are only the tip of the iceberg.

  • Trouble is I'm too prone to them at the moment!

  • Same here but thinking to try to get to root and tackle it rather than dealing with things on the superficial level that the allopathic model dishes out -or doesn't when it comes to T3 lol!

  • Do agree to a large extent but also think we need to stand up and be counted. Was never so militant!!! What is this doing to me???

  • Just been on 38degrees! Thanks for heads up.

    Consider you adrenals. They may not be function correctly and you will struggle with thyroids balance if they are compromised and affecting you uptake of meds. My experience only.

  • This is why I self medicate. I've only had to put up with doctors and my thyroid issues since pregnancy and even that has done my head in and they made me ill. I will luckily be free of it again soon. I am not saying it's for everyone but when you know more about it than the doctors then you have to question who is better being in charge of your health? You or the doctor? They seriously have no clue most of the time.

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