Speaking to my GP this morning

Speaking to my GP this morning

I am so nervous. Thank you for all your help so far. I appreciate it. I have my GP calling after morning surgery and I am really nervous. I hate challenging GP's about results as they always make me feel like I am worrying over nothing.

I asked for a print out which I am sure the GP won't be best pleased about when he finds out ;-) I am just worried he will say I am fine and tell me to go on my way. I spoke to him last week about how unwell I feel. When I stand up I feel a heavy rush to my head and out of breath which is a drop in BP I know but it started with the fatigue. The fatigue is daily, all day some days, others I feel a little better late afternoon. If I workout I feel unwell for days. I just generally feel very fatigued and weak. I get muscle weakness alot. My anxiety is through the roof, and my agoraphobia has crept back in that i used to suffer with but it's because I feel so fatigued and not with it. Sensitive to light, I always wear shades lately, even not on sunny days and look a fool. Dry mouth on the days the fatigue is really bad. In general very yuk. I often have sudden weak spells and feel panicky. I know my GP will say this is anxiety but I know it isn't as my anxiety has never been physical like this.

I am posting a photo of my blood results. Am I right to be questioning them? I know my ferritin is low, it's been low for 10 years, it was 8 last year. I need iron tablets so that's another reason I am calling as the Spatone just isn't helping.

Thank you for all your help. Sorry to post again but I could do with some words of encouragement.

Julie

30 Replies

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  • You are so right to question Jingy. It's your health and your life that's on the line.

    My sister was misdiagnosed with ME for years and then dementia. It turned out to be severe B12 deficiency. None of our family would now be well if we hadn't done our own research.

    Make notes and be brave and quietly assertive. Is it possible for someone to be with you?

    Very best wishes for a good outcome.

  • Hi Polaris,

    Thank you.

    It is over the phone so I will be on my own but I am still nervous lol!! You know what GP's can be like, if things are in range they don't question them and assume you are imagining feeling ill.

    I shall update once he had called.

    Julie

  • Hi Julie

    We are in charge of our own health so don't be nervous as all of us on this site now get copies of our blood test results. Many GPs are of the opinion that if the TSH is 'in range' we're fine but we are not.

    Just be polite and tell him that as your TSH is over 5 and you have many clinical symptoms you'd like a trial of levothyroxine. Many countries prescribe if TSH is around 3 and above but the UK is very backward in that doctors are told that, without symptoms, wait till TSH is 10. Just point out your symptoms.

    Because your B12 has been highlighted as low, ask for a test on the intrinsic factor to exclude pernicious anaemia (the intrinsic factor) and then if he won't help you with injections you can get sublingual B12 lozenges which are good.

    Others will reply re your other blood tests.

    Courage - and hope you feel better soon.

  • Thank you Shaws.

    Do you think at my tsh 5.33 he will agree to treatment? My T4 is 11 so I am guessing he will say that is fine.

    I shall be questioning the B12 and also asking for iron to up my ferritin level.

    I shall update once he has called. I feel so nervous about speaking to him, silly really.

    Julie

  • If he says you don't need a prescription, just say that you have contacted Healthunlocked Thyroiduk and Thyroiduk.org.uk is the choice of NHS Choices and the advice from them (Thyroiduk.org.uk) is and quote the following or say that you could email the info to him for his perusal.

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

    Good luck and you might well be lucky and not need to give him the above info.

  • Thank you. I shall send him that before I next speak to him. Thankfully it won't be the GP i spoke to today.

    The GP today said 5.33 and a T4 of 11 wouldn't cause any symptoms and he said it would just be my ferritin causing how I feel.

    Julie

  • Sometimes I think it's responses like you've had above would lead me to think it is those that need thyroid hormone replacement as the responses don't make sense. Why would other countries prescribe if the TSH is 3? Before long you will know more than many, like most of us on the forum have had to learn the hard way.

  • Thank you Shaw.

    I did tell him on Thyroid Foundation UK it states a normal tsh is up to 4.5 and that's a uk site. He wouldn't take me seriously. I'm just Julie the anxiety patient.

    Julie

  • This is an extract and many doctors haven't a clue about how to treat patients. The TSH is only a GUIDE not to be used as a diagnosis but they do so, therefore the patient continues in illhealth with a myriad of medications for the symptoms instead of thyroid hormones. Extract:

    A thyroid-stimulating hormone (TSH) blood test is used to check for thyroid gland problems.

    The normal values listed here—called a reference range—are just a guide. These ranges vary from lab to lab, and your lab may have a different range for what's normal. Your lab report should contain the range your lab uses. Also, your doctor will evaluate your results based on your health and other factors. This means that a value that falls outside the normal values listed here may still be normal for you or your lab.

    webmd.com/women/thyroid-sti...

    Tell him you will have to think about changing your doctor.

  • Well it wasn't my usual GP, it was one that I don't see and have no confidence in him after he misdiagnosed my sons condition resulting in an emergency operation, but we won't go there ;-)

    He said my ferritin was in my boots so I am on ferrous gluconate 300mg once a day.

    My B12 he just said 'that's normal, no need to treat it'. I tried to question him but he wasn't budging.

    My thyroid, he agreed my TSH at 5.33 was high end of normal so borderline result. He said that is likely to flip over to the other side then we can treat it, he said he wants to do a blood test again in 6 months. 6 months??!!! He said 'there is no point checking it every 2 minutes'. Not that I asked him too. He said 'with hypothyroidism being through your mums side you will probably end up with the same and need thyroxine but I can't give you thyroxine until you got over the 5.5'. I asked would I be symptomatic at my result and he said 'probably not'. I told him how unwell I feel and how bad the fatigue was but he just dismissed it was being my ferritin and nothing to do with my thyroid.

    I will leave this 6 weeks then I will see my GP for a chat and ask for my bloods done be redone maybe beginning of November, that way it's been about 10 weeks. I cannot carry on feeling like this if it is my ferritin.

    In the meantime I will take my iron for my ferritin. Should I be taking something for b12? as I know 212 is a low result. I take a multivitamin from Biocare and that contains 30ug of b12. I have been taking that for a while now.

    So I now feel silly, as though I have imagined how ill I feel, he probably thought oh it's Julie the worrier, as I have anxiety on my notes. He didn't seem to take how I felt seriously and just said it would be my ferritin. I didn't feel there was much else I could say as he said it can't be my thyroid at 5.33.

    Thank you all for your help. You have all been so kind.

    Julie

  • Julie, If he knows it runs in your family why don't you suggest he tests your antibodies level. If you have Hashi's then you should start treatment straightaway to get your TSH under 2, ideally around 1. He should know this. I have been through this with my GP and I ended up house bound with a sky high TSH and very low FT4. You are just going to get worse if it's auto-immune. If the result is negative for antibodies maybe he has no choice other than to monitor you or trial levo/monitor you.

  • Great advice, thank you.

    I will leave it 6 weeks then speak to my GP and ask for my antibodies to be tested as Hashimotos runs right through my mum and her sisters.

    Today he was very dismissive saying a result of 5.33 wouldn't cause any symptoms. He said my T4 at 11 was normal.

    Thank you.

    Julie

  • You could always do a private home blood test (finger prick) and see what the results are. I followed my GP and ended off losing my businesses and having to sell virtually everything I owned.

    The upper lab range for TSH is way too high in the UK, you would be treated in any European/US country by now. But that statement doesn't get you better.

    When my TSH is 4-5 I feel like death with heart palpitations and horrendous panic and anxiety attacks, and severe air hunger. Your GP(s) is not listening to you at all, which is the problem. Mine is the same.

  • Where would be the best lab for a test? The thing is i don't get much blood out at a finger prick test, I have tried in the past when I did a coeliac test lol! I would be willing to re try. Would a GP take a private result seriously?

    He wasn't listening. My GP who rang me last week said he was sure I had an underactive thyroid and wanted the test done, I am sure he would have listened to me more today if he had been in.

    I have anxiety anyway but this year I have noticed it has got worse. I have OCD apparently as I have intrusive thoughts at times, which are worse since the fatigue hit, I get occasional panic attacks and just generally feel anxious for no reason half the time. It's horrible. I feel ill every day but of course he says it's all the ferritin and I have anxiety.

    Thank you

    Julie

  • Not sure I can post a link to the blood test website on here for fear someone may have palpitations when seeing it! If you go to the thyroid UK website they have links for private testing and home blood tests. I used one last month, bit of a bi*ch to do but easy enough.

    You do need your vits/minerals to be good with hypothyroidism so you may need to check vitamin D also. Mine was undetectable and a course of high dosage D3 got it back up to where it should be and I do feel better on maintenance dosage of 5000IU every other day, which I take with super K (K1, K2). Vit D is quite often low in Hashimoto's sufferers as are other vits like your B12 (that is low in your test results). Mine was similar and I supplemented 1000mcg B12 methylcobalamin and my dry mouth, brain fog and general feeling of lethargy have all got better.

    I was prescribed beta-blockers for the anxiety/panic attacks, which I still take but feel now I can probably come off them. I also suffered with strange thought processes and confusion.

    Hopefully you can see your GP soon and get the tests/treatment done sooner rather than later Julie. The longer it goes on the longer it takes to recover. I'm still on the road to recovery but can see the road at last.

  • Thank you. I shall take a look.

    Do you think your anxiety and thoughts were linked with your poor iron or thyroid?

    Another symptom is I keep crying for no reason? Just suddenly crying but not feeling depressed. Just anxious.

    My gp said he couldn't do my vitamin d test he had to do bike profile first, which came back normal.

    Thanks for your help.

    Julie

  • Julie, Anxiety definitely caused by my thyroid, for me anyway. I used to have feelings of complete and utter despair and feelings of doom/dread. I wanted to be alone. I used to retch when the phone rang or when someone was due to arrive at my house. I used to think "what am I going to do?" and start panicking and crying, which would then turn into aggression. I used to be very difficult to live with. I used to have weird thoughts, almost compelling that topping myself would be the only solution to what was happening to me. I used to rehearse how I would do this. As I've increased my T4/T3 these feelings have gone completely. I occasionally get very slight anxiety, particularly after doing too much physically when I feel hypo, but not that bad now. Like shaws wrote, a lot of hypothyroid patients suffer massively with mental health problems. I still suffer with fatigue so am looking at increasing my dosage soon after I get my B12 checked.

    I was offered the usual CBT for anxiety, which I never attended as I just knew my problem wasn't mind over matter.

    You can get vit D tested for £25 (4 drops of blood at home). I might have to recheck mine as GP has forgotten about it.

  • Wow reading that I could relate so much.

    I had scary thoughts and still can so I get anxious being around people. If I know I have people coming to my house i too get very anxious. I dread appointments and the last 2 years can't do them without my husband as I fear I will panic and show myself up. I wasn't like this before. I had anxiety after a stressful time with my family after my brother attacked my husband (brother has serious mental health issues), I had anxiety and developed agoraphobia. It then morphed into these thoughts and high anxiety despite staying away from stress from my extended family. I always thought this isn't like me at all.

    Then this year the fatigue hit and agoraphobia crept back in. Urgh I've felt awful. My anxiety is now general and I just keep thinking this isn't like me at all and it's why I told my gp how fatigued I was and so very anxious.

    I am considering private tests.

    Thank you

    Julie

  • Sounds very similar. You've had a stressful time, it's bad enough feeling that way without external stress such as your brother. I used to hate any family gatherings. My family are much better now as they know I don't always feel up to doing things - this helps massively although I often feel guilty if I miss going somewhere or doing anything. I had a great day yesterday but when that happens I always over do things physically and workwise - today feel quite hypo and waking body temp of 35.5 deg.C. Nevermind, see what tomorrow brings!

  • I obviously meant bone profile 😂

  • My GP took the private test results and acted on them

  • There are many hypothyroid patients with 'mental conditions' within their notes - it is not the fault of the patients but the way guidelines are interpreted by doctors. They do NOT seem to realise that being hypothyroid is serious - and the patients if underdosed/undiagnosed can develop other diseases. Due to their reliance only upon the blood tests many people do not have sufficient T3 going to their brains (as well as the billions in our bodies) which can result in them being diagnosed with psychotic problems or anything other than hypo.

    Vitamin B12, the importance of - also seems to evade them, considering it can lead to neurological problems if untreated from which the patient might never recover. Don't supplement until you have been tested for P.A. (pernicious anaemia) as supplementing with B12 beforehand can mess up the blood tests.

  • I am worried about my b12..is 212 very low? I worry it's low enough to cause damage.

    I feel so tearful. I was diagnosed with anxiety a fee years ago after a tough time with my family but even with meds and cbt it's got not much better. I still struggle. Diagnosed with anxiety and ocd type thoughts. Urgh.

    Thank you.

    Julie

  • I know exactly how you feel Jingyd35,

    I had the exact same conversation with my GP this morning and my B12 level is 178. I was also told I was "unstable". Low B12 causes mental health problems. There is over 100 years' worth of medical evidence of this, yet doctors seem to ignore the fact that the very madness they are dismissing is one of the biggest tell-tale signs of B12 deficiency!

    Honestly, since I started feeling ill, I feel as if I've fallen down a rabbit hole and I'm sitting at a tea party with GPs all wearing 10 and 6 top hats...

  • I feel for you. It's awful that we have to make ourselves feel better by researching and buying supplements because our gp won't help.

    Hugs to you.

    Julie

  • All of your symptoms could well be due to too little thyroid hormones. They are horrible and I used to have awful sensations too but am fine now I am on the right dose and hormones. They will diagnose us with anything other than hypothyroidism and 'what comes first' symptoms or hypothyroidism. Usually it is symptoms but it might never enter their head it is really due to hypothyroidism, sometimes if our TSH doesn't reach a 'level' to be diagnosed whereas in the past we were always diagnosed by our symptoms.

    First, talk to your GP about the possibility of you having Pernicious Anaemia. After that if he still thinks your B12 is fine. Buy some supplements. I buy mine through Amazon and we cannot overdose as any excess is excreted through urine. We only need to take a daily dose, sublingual, which means you just put a couple under your tongue and they dissolve and go directly into your blood stream. If you use the following link (you don't have to) it will be helpful for Thyroiduk.org.uk

    healthunlocked.com/thyroidu...

    We feel get tearful and anxious as well due to being hypothyroid when things aren't going smoothly.

    You are now learning how to recover your health - sometimes we have to do it alone and some of us have a sympathetic doctor. (rare sometimes).

    Your B12 is in the 'low end' of the range so your GP will be happy. Preferably we should be towards the upper part but with supplements it will rise quite quickly.

  • Thank you so much. I shall buy some of the b12 for sure. Are they ok to take if you're on medication? I am only on a low dose anti depressant for my anxiety.

    I feel like I have to diagnose myself. At 5.33 and a t4 of 11 surely I have hypothyroidism and he can't blame this all on my ferritin.

    I read raising ferritin can help as low ferritin can affect how the thyroid works. So if I raise my ferritin does that mean that this isn't hypothyroidism? My gp had no idea.

    Everyone here has been so helpful. Thank you

    Julie

  • I forgot the most important thing, if you supplement with B12 it has to be methylcobalamin and not cyanocobalamin.

    Always take supplements/ other meds 4 hours away from levo.

  • Thank you. I shall order some tomorrow. I will look online.

  • Can I ask why that form of b12 is better? I have done some googling and Biocare do a b12 liquid but it's Hydroxocobalamin. Is this not any good?

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