Seen Endo yesterday, USELESS !!

TSH 0.87 (range 0.35-4.94)

FT4 (range 9.0-19.0)

I was diagnosed 8 months ago hypo with TSH of 126.43 and had over 1000 auto antibodies.

Currently on 75mg one day and 100mg next day.

Went to see endo yesterday in Sheffield for a 2nd appt to get results of blood tests for cortisol, rhematoid arthritis etc, he said all was normal.

I am far from feeling normal!! I explained to him that I was in bed all Friday afternoon (which isn't unusual cause I'm constantly exhausted, last Sunday was really bad, felt like I had something stuck in my throat, my thyroid was enlarged and hard, shaking, teary, internal shaking, spent most of day in bed.

He didn't take any notice of what I said, just said my TSH was fine and results are fine.

I asked him if I had possibly adrenal fatigue and he said he did not recognise that word!!

I asked if I had Hashimoto's cause of autoantibodies that I have and he said it was postpartum thyroiditis, looked this up on google and you only have it for a year after having a baby, I had my last baby 7 years ago!

I said that I have terrible aches and pains in my fingers, wrists and hands and he said he would refer me to rheumatology which he said he would do at last appt 4 weeks ago.

I then asked him for copies for all my results and he looked really surprised, he went quiet and then after a while, said he would post them out. I asked him if I was possibly allergic to levothyroxin and perhaps that's why I wasn't responding and he just said in a really patronising voice, your not allergic to it.

I am totally fed up with fighting to get myself better, I noticed my ferritin was below range and he hasn't done anything about it, I just wish I had stood up for myself better and demanded for more help.

I asked him about having my T3 checked but they don't check for that in Sheffield! I'm wondering whether I'm not converting my T4 to T3 ????

Is it worth buying Amour thyroid and seeing if that helps????

Basically the Endo has washed his hands of me and referred me to Rheumatology, I'm so annoyed that after telling him I'm still not well, because it's not normal for a woman of 37 to have to go to bed 3 times a week to sleep for 4 hours in an afternoon??!!

I would be so grateful if anyone had any advice they could give me or what I should do next? So sorry for rambling on!

Many thanks

14 Replies

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  • You def. need better than this. It may take a while, but your case is clear to anyone with an inkling about thyroid.

    I wouldn't self medicate right now as you have a good case on merit to get treated, properly!

    Insist on your results and plague them daily till they wish you never existed. You're entitled to them.

    Complancency is a nice comfort zone- for THEM!

    A second opinion would be good.

    PS: Your T4 level is missing- just the range shows..

  • Hi Tegz, thanks for your reply, apparently where I live they don't test for T4 either, perhaps I should move to another part of the country ha ha!!

    I think your right, I will try and see a different Endo, never want to see the one I saw yesterday ever again!! I just felt like he couldn't be bothered to look into my history or understand that I am not well.

  • Sorry brain fog moment!! My FT4 was 13.5

    Apparently they don't test T4

  • I meant FT4 actually :) Either way, with a raving TSH initially, you need high FT4. Others can advice on numbers as I haven't had their experience.

    You couldn't do much worse for an Endo, but not uncommon. As you are still getting to optimal dose, your old results [and T3 levels which Endos can do] are important to show progress.

    Your new Endo may well pursue this T3 path if you push- but test more use after you get T3- to see affects.

    It looks that way to me- others may comment further...

  • Country Girl, you did extremely well with your questions and rebuttal. These doctors are supremely defensive of the untenable stance of the NHS. Obviously these brick walls seem to be insurmountable but you can try tegz advice if you have the strength. You obviously are getting the minimum treatment but at a crossroads which could prove very

    costly to your health if not chosen correctly. Your body cannot adapt well when constantly hitting a wall of under dosing. stopthethyroidmadness.com/m...

  • Hi Heloise, thanks for your kind words, sorry for my long post, I feel better now that I have told people how I feel about my treatment yesterday. I am going to keep on fighting and try and see another Endo. I think your right about the NHS, they have so little money that they don't want to pursue as what they see as non urgent cases.

  • If your ferritin is below. range you will have trouble converting T4 to T3. I find it absolutely shocking that we know this yet the 'experts' don't! Most people feel best when their ferritin is around 70-90 and most certainly NOT below range!

    I suggest, before spending lots of money on private doctors/T3/NDT or whatever, get that ferritin level up. A good quality iron supplement taken with vitamin C, vitamin B12 and a B complex should help improve your ferritin level. Hopefully this will help.

    When I was on T4 only (I don't convert well) I had a lot of joint pain and RA was suspected. This is greatly improved now I am on T3. I suspect, if your conversion problem is caused by low ferritin, that improving your ferritin level will improve conversion and consequently improve your joint pain etc. If it doesn't, you might need to look into other treatments.

    I hope you find the answer and a doctor who actually knows something about this disease!

    Carolyn x

  • Hi Carolyn

    Thank you for your brilliant reply, I will go out tomorrow and buy some iron supplements and vitamin B etc to improve my ferritin levels. It will be interesting to see if on improving my ferritin levels it will improve my joint aches and pains. I tried to tell the Endo yesterday did he think maybe I wasn't converting properly but he just shook his head!! I'm so glad I found this forum I have learnt so much from you all and not give up but keep on improving my knowledge!

    Best wishes

    X

  • If you are going to supplement on the basis of getting best T4 to T3 conversion, then get the right ones... for B12, NOT cyanocobalamin, get Methylcobalamin; for Iron, Iron (ferrous) bis-glycinate is supposed to be the easiest to get on with, and for Folate, then the type described here: is safest - chriskresser.com/folate-vs-... and easiest to assimilate. Vitamin D3 is a very good idea too... at least 2000iu, maybe 5000, although if you take D3, then it is safest to take vitamin K2 too (NOT vitamin K) as it helps keep calcium in the bones, not in the bloodstream! Magnesium is well worth thinking about too, as it is commonly low. Selenium too.

    I personally think calcium is best/safest from food (eat dairy) rather than supplements, but this has some general info in terms of thyroid thyroiduk.org.uk/tuk/treatm...

  • Thanks for all the information, it's just so confusing knowing what to do for the best. I'm not sure whether to start taking all these vitamins to try and make me feel better or wait and see if I can see a different Endo and see what they suggest but even if I do get to see another one they might be just as useless!!

  • Country girl at your next appointment with the rheumatologist, tell them that you want a second opinion on the endocrinologists conclusions. Get the list of endos from Thyroid UK pick a name you are happy with and ask the endo to refer you. They cannot refuse to. Puts the endo in your current hospital on the spot. They will either review what they told you today - they might take what you told them seriously - or they will make the referral.

    Quote the NHS Constitution which says you can be treated by a specialist of your choice and you must be involved in your treatment plan.

  • I think you are reading MUCH more into it than exists... they most certainly CAN refuse... they don't often do that, but it's simply not as straightforward as that - doesn't say you shouldn't ask though, either the consultant or your GP.

    nhs.uk/chq/Pages/1317.aspx?...

    nhs.uk/chq/Pages/910.aspx

    adviceguide.org.uk/england/...

  • Hi Peacefullbliss

    That's a really good idea, I didn't know that you could do that. It's a good idea to get another professional to review the Endo's conclusions and get a second opinion.

    Thank you so much for your reply. I will have a good read of the NHS constitution.

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