I am so angry

I am so angry and upset I can barely type this!! I have just come back from the first appointment with the endo since my hemilobectomy and she wants to cut my medication because she thinks I am over medicated because of the TSH level despite having hypo symptoms and no hyper symptoms. She just didn't listen to a word I said.

My latest blood test results are TSH 0.09 (0.35-5.00), FT4 7.1 (9.0-20.0), ft3 3.4 (2.5-5.7). This is on 30mg t3. The week before was TSH 0.39, ft4 6.8, ft3 2.8. On 20mg t3.

I am so tired in the evening I can't do anything, cold, feel like I am coming down with flu of an evening . I really thought that a small increase in medication would mean I would be in the right track to getting better, not in my wildest dreams did I ever think she would reduce the medication after having lost half my thyroid!

She simply would not listen to a word I said and in the end as I wanted to be very clear on this, got out of her that she was basing her decision to reduce the medication solely on the TSH result and nothing else counts. I said that I thought a suppressed TSH is not usual if you are on t3 monotherapy but she would have it.

I am so angry as I was so reluctant to have the operation in the first place as I thought that this was where I would end up and despite being assured that I would be adequately replaced here I am exactly where I thought I would be.

I would welcome advice on where to go from here.

24 Replies

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  • I am sorry to hear this, may I suggest you request to see a second opinion doctor as this is your entitlement and explain why at your request point. Good luck

  • Self medicate with NDT

  • Where do you but it from?

  • If anyone has information it has to be by Private Message.

    I am sorry Churchie that your consultation ended so badly. At least you know more than the Endocrinologist i.e. that the TSH is meaningless if we still have clinical symptoms. Let's hope she doesn't remove your T3 and substitute levothyroxine which I think is usual although some members find T4/T3 good. Not me. T3 only woman.

    We have to read and learn in order to recover our own health I am afraid when we come up against doctors who appear not to understand metabolism whatsoever and act only upon the TSH whilst ignoring blatant clinical symptoms. This is how patients 'used' to be treated before the blood tests became the diagnosis. Read first question.

    web.archive.org/web/2010103...

    There are also other topics on this link (some links within may not work as it is an archived link as Dr Lowe died accidentally) which may interest you.

    web.archive.org/web/2010103...

  • Oh churchie, what an absolute BETRAYAL but I'm thinking it is becoming clear that this system is not to be trusted. At least it is too difficult to find the few you can. I'm surprised you were given T3 so you would think she would understand...but obviously not. Does she have to know how much you are taking? I'd get enough of a supply of t3 to supplement what you are already supplied by NHS and just let her expound her opinion without question.

  • Churchie, ask to see another endo for a second opinion as Celet suggested. I think your endo is wrong as your FT3 is very low.

  • How would you go about assessing who to see?

  • Churchie, either ask to see the head of dept or get the member recommended list from louise.warvill@thyroiduk.org.uk

    Will your GP be onside with you or will s/he follow the endo's recommendation?

  • You have to agree or at least keep quiet if the doctor wants to reduce your meds, were I you I would go to PALS and complain!!

  • I had half of my thyroid removed and they won't give me anything at al! They say I don't need it my levels are ok

  • Do you feel that you are undermedicated? Did you go it alone?

  • Definitely! Initially after it was found they were concerned then my results went missing and they kept saying 'wait and see' . Then I felt like I was swallowing a brick. They said 'it's indigestion' my voice went; 'it's in your mind'. They even sent me to a speech therapist and she said 'it's the tumour in your thyroid'. They said they hadn't heard anything from her and they would take it out, if I insisted and I shouldn't darken the doors of the hospital again! Luckily my daughter is a nurse and got me to see someone at her hospital and he found a massive tumour that was crushing my windpipe and had grown around my nerve supply to my voice box.

    They did bloods after with a view to my having thyroxine but said it was fine. But the other side is growing and I've been left now I've got alsorts going on health wise.

  • Gosh you sound like me. I had half my thyroid removed last Friday after being told my voice or lack of and swallowing difficulties were all in my head to an urgent op last week. Waiting to see how my body is going to take it. It feels as if it's trying to work things out - wired feeling. I have a throat infection so taking some antibiotics and even doing little things are wearing me out. Stitches out tomorrow, results another week away, bloods another two weeks after that but I have my NDT if they won't treat me. I was just beginning to feel good before my op.

  • It helps if you add a thickener to your drinking water, less likely to choke. I have taken three years to get my throat less husky and to speak on the phone. My confidence has taken a big knock, due to not being believed, don't know about you? I tried to sue but the guy they got to do my medical assessment turned out to be a friend of the idiot who accused me of malingering! Then it was too late to sue them, even though the consultant who did my op said I was close to choking to death.

    Another ENT guy suggested I had Hashimotos disease in the early diagnosis because you show normal T's because your thyroid grows in order to keep your levels balanced in your blood but the main guy wouldn't have that! It's scary isn't it? I have now been found to have an abnormality in my kidney after being told at the other hospital that it has disappeared on its own!

  • It is scary but after I got over my disappointment I decided to take control as much as I can. I feel better for my nodule out - I can breathe and swallow so much better. I have NDT for when they tell me your bloods are all in range. I have my vits and I will make me feel alive again with the kind guidance here and from how I feel - not what my bloods say. I will get my speech therapy and see how I go. I decided I couldn't wait for the Drs to help me.

  • I couldn't have speech therapy after my op because my laryngeal nerve was damaged and the more therapy I had the less I could speak. So my specialist stopped it. What's NTD?

  • Natural dessicated Thyroid (usually pig thyroid extract) was used for over 100 years before pharmaceutical version 'Levothyroxine' the pill of choice, it only contains T4 but NDT contains more (bit like diabetics' natural insulin vs synthetic version - the latter is an incomplete copy)

    thyroiduk.org.uk/tuk/treatm...

    petition here...

    epetitions.direct.gov.uk/pe...

    J D:

  • Very interesting! I'll check that out after I find out what they're doing about my kidney.

  • So sorry to hear about your appointment, and also sorry that I have no useful advice whatsoever, but your post just confirms my belief that you really can't trust what doctors say. I have had relatively good appointments with a new endo and GP recently, but am still so wary. They muck around with your health, but seem to have no idea just how unwell their patients feel.

  • Churchie there is nothing so upsetting than an Endo with ear defenders on!!! You are under medicated as your free t3 could do with being higher!!! And you have symptoms!!! No use going by tsh at the best of times but especially when taking t3!

    Where in the country are you??

    Sue

    thyroiduk.org

  • I'm in the UK - Essex. I even pointed back to the blood results before my op to show what my blood levels were like when I felt well and they were much higher than when now - but apparently that doesn't count now

  • You are so obviously UNDER medicated - low T4 and T3 - it beggars belief. Perhaps you saw the cleaner, not an endo. Was it someone on Louise's list? I'd go for a second opinion and just refuse to reduce meds - you have to agree to a change. If you had the op because you were over active, TSH can take a long time to rise (if it ever does). An endo should know that.

  • I like the comment of the cleaner cos I might have had better I fo if I had seen her. No not on Louise's list but I have got that now and looking through to get a second opinion. Are you sure about me having to agree to reduce meds, I didnt know that and that will help. I am trying to see my GP at the moment but it seems he practically retired at Christmas so will have to transfer to another and start again there :(

  • I do not know if this is going to help or not but there are no constants in the body, it seems like are body's are going in and out of too much and not enough. It is not either just one thing, your whole body is imbalanced and more things are working overtime and not enough creating complex treatments. Something interesting happened when my doctor raised my Levothyroxine. I lost all my muscle strength and could not even squeeze her finger. We reduced it by only 12.5mg and my strength came back within 2 days, before that we did not know if my muscles had wasted away or if they were just turned off. I am on here looking today because I feel shaky which is I think a symptom also of too much. I have a few auto-immune diseases and Levothyroxine had no effect on raising my body temp (35c) nor did it have an effect to give me more energy. This I should say has all been going on more than 10 years. Each day I have to check and give myself vitamins based on food, to keep the deficiencies in check. When I get sick or such, then it is a guessing game only and the supplements are just a boost to the body. Look at your body as a whole, and instead of getting mad ask your doctor why and have a discussion about what your concerns are. Please also be aware that they have learned more about how the immune system, endocrine, neuroendocrine and lymph systems ect work in the last two years than they have in all the history before. Look into more things, and look for natural superfood supplements that have no side effects to try. You need your doctor on your team, so use your journal and notes on sleep, nutrition, emotion, medications etc put in a graph form or an easy to read format so it is easy to grasp what is going on in you. When we just talk it is hard to see sometimes the problems in an accurate way.

    Good luck and wish you the best of health

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