Endo Appointment today

If any of you experienced Hypothyroid people could give me your opinion on this I would be gratefuI. I had my appointment at Salford Royal today, I had hoped to see Dr Annice Mukherjee but I was seen by an endocrinologist Sister, who is part of Dr Mukherjee's team. I don't know if I am being cynical, but I got the impression she had read notes from my GP and was just agreeing with his opinion of me. I have had a few disagreements with him, and I do not feel he is very knowedgeable about Thyroid issues. I also think that he is under the impression that because my original blood test was borderline that I do not really need medication for Hypothyroidism. I had kind of given up going to see him as I was hoping to get help from this appointment and I am fed up with his remarks such as when he reduced my dosage and I told him my symptoms had returned, he lectured me that everyone feels better on Levothyroxine even those with normal thyroid levels would feel the benefit of increased energy, but that if you don't need it or take too high a dose that you risk heart problems. I had gained about 2 stones in weight for no reason, and when I told him that I thought my metabolism had slowed down significantly, he went on to tell me that as a GP he has to be wary of women trying to obtain Levo in order to lose weight. He has also mentioned my symptoms possibly being down to the menopause. Virtually all of these comments were repeated today by the sister. She sent me for blood tests and when I mentioned having taken my medication this morning, she said that this would not affect the results, and also the fact the blood was drawn at 10.30am would not mean that the TSH would be lower than an earlier draw. The tests are for under active thyroid (TSH only), hormones to determine menopause and also she considers Chronic Fatigue Syndrome is a likely cause of my symptoms. All of this sounds like the things people complain about on Health Unlocked, so I fear I am about to be fobbed off.

15 Replies

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  • Suggest you check levels of vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells.

    Also have you had thyroid antibodies checked? There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's, the most common cause of being hypo. NHS rarely checks TPO and almost never checks TG. NHS believes it is impossible to have negative TPO and raised TG. It's rare, but not impossible

    When you get results suggest you make a new post on here and members can offer advice on any vitamin supplements needed

    If you can not get GP to do these tests, then like many of us, you can get them done privately

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

    Blue Horizon - Thyroid plus eleven tests all these.

    This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.

    Usual advice on this test, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) don't take Levo in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible.

    If you have Hashimoto's then you may find adopting 100% gluten free diet can help reduce symptoms, and lower antibodies too.

    amymyersmd.com/2016/08/is-g...

    Vitamin and minerals levels are very important, but standard NHS thinking, doesn't at the moment seem to recognise this. You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D and gluten connection to autoimmune Hashimoto's too.

  • In June last year they tested TPO in June last year and as it was <28 the sister said it could not possibly be Hashimoto's. The recommendation to take the blood early in the morning before food and 24 hours after your last dose of Levo, is what I thought, however the sister did not agree and went ahead taking the blood test at 10.30am after I had taken my Levo at 7am and had breakfast at 8am - therefore I reckon the TSH will reflect what she and the GP want it to do - and confirm the dose which I am on as being correct or even too high. Not that I am cynical or anything...

  • There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin)

    BOTH need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's, the most common cause of being hypo.

    NHS almost never checks TG, believing it is impossible to have negative TPO and raised TG. It's rare, but not impossible.

  • The sister yesterday would not hear of testing the TG Ab, as she insisted I could not possibly have Hashimoto's due to having a TPO Ab of <28 in June 2015. I think I may have to pay up and go private...

  • Can't have women losing weight on levo! Then the doctor wouldn't be able to sneer at overweight women any more and blame them for being fat!

    The thing that is so stupid about his stance on levo, is that many, many women actually put on weight on levo, not lose it.

  • Yes, he's talking out of the back of his pants! Obviously a misogynist!

    But that Sister should be ashamed of herself!

  • When I get the results, I will post them on for advice, but as they do not include T4, T3 or rT3 I am thinking I may have to get my own done privately in order to find out more useful information. The Sister looked at a blood test which was done in June last year and said it was not necessary to test the above due to being the T4 being in the normal range - even though it was at the very bottom of the range. When I mentioned that the level was 10 on a range of 10-14 she said "normal" is "normal" wherever it is in the range!

  • Silly cow. Just goes to show how ignorant she is! Mind you, that is a very short gap on that range. But it's still not optimal.

    If you see her again, tell her there's no such thing as 'normal', where thyroid is concerned - 'normal' is a programme on a washing machine! And just 'in range' is not good enough, you want 'optimal'!

  • Yes, Dr Annice Mukhergee is an endocrinologist. If as I predict, this consultation results in being told I have chronic fatigue syndrome or being referred back to my awful GP for him to treat me with HRT for menopause and to continue to under medicate me for hypothyroidism, then I think going to see Dr Mukhergee via the private route will be my next move. My last TSH test gave a result of 3.1 on a range of 0 - 4 and this was on Levo which he was happy with, despite me feeling almost as bad as before being treated, so this level of help is not really acceptable to me.

  • Stick to your guns! Ask the nurse if you can see the endo in charge not the members of the team. You will probably have to wait but its not too long and its worth it to see the endo of YOUR choice.

  • When I went to the appointment yesterday this Sister was the only person on duty, and the referral was through my GP who told me he could only request the hospital and Endocrinologist; however it could be a member of the Endocrinologist's team. The referral was made last December and I was given an appointment in June which was cancelled, then re made for August 17th which was then cancelled and then they made me one for yesterday. It was very disappointing to have the appointments cancelled (by them), and after waiting so many months to end up with a member of the team who seemed so willing to agree with the GP and unwilling to listen to my symptoms - focusing totally on TSH and even getting the blood test done after my medication and so late in the morning. I think I may have to try to see Dr Mukherjee as a private patient.

  • I stand by what I said!

  • I paid to see Dr Mukherjee with private blood test I already had showing high TPO antibody of 223 and a TSH 3.17, also high cortisol levels morning and night. She said it could be adrenal fatigue but thought my thyroid was fine? She referred me to her clinic in Salford on the NHS because she said I needed a lot of test. I waited 5months for the app. and saw a male consultant who did a blood test and the test for Cushings, before the results came back he said I had CFS and said I didn't need to go back. I am afraid none of them know very much, I was so disappointed after getting my hope's up that I had found a Dr who could help me get better.

    Good Luck

  • Thanks for your reply Beechmount. Have you found anyone else to be helpful? I guess you must live fairly locally to me - I am in Stockport. It is so difficult to get help with this illness! I have read on this forum that CFS is just a way of fobbing patients off; has this been the case for you? I have also got a problem trying to find a helpful GP - mine (and the other 2 in the practice I have seen) make me feel like I am asking for something I am not entitled to, am a hypochondriac or trying to find a magic pill to make me 21 again or something! I would change Doctor's Surgery if only I could get a recommendation for one which has a Thyroid Friendly GP!

  • Hi, sorry for the delay but I have only just seen your reply. I live in Kearsley, Bolton. I am in a similar position to you that my GP thinks I am NORMAL because they say my bloods are fine except for high cholesterol and in the last 12 months Diabetic. I have been offered statins and antidepressants because I got upset while telling the Dr. how ill I feel, I did not take either because I know it is because of having low thyroid. I tried Thyroid S it brought my cholesterol down from 7 to 4.9 and the Dr. thought it was because I was taking the statins it also helped the depression but overhaul it did'nt suit me. I saw Dr P who told me I had Adrenal Ex as well as Hashimoto's but I could'nt tolerate the Nutri Adrenal or Nutri Thyroid supplements. I am now taking Holy Basil, Ashwagandha, B12, VitD, centrum chewable multi vit's which Dr Mukhergee recommeded because I had my large bowel removed because of crohns disease. I also am self medicating on low dose naltrexone because I have the TPO antibodies, I now have some OK days but I never know when they are going to be. I understand your frustration but all we can do is keep reading about the disease and hope with the help of these wonderful people on this site we can get better.

    Take care

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