HELP PLEASE!

Hi, I have posted on here before about allergy problems causing me to not be able to tolerate levothyroxine, so have never been on any in the 7 years since I was diagnosed with hypothyroidism. But this time I would like to ask a question about my recent blood levels. My TSH had gone up to 40.32 in the blood test I had in January 2015, Free T4 is low 10.3 and T3 is normal. I had an MRI of my brain/pituitary gland last June 2014 and they said they had found either a microadenoma or a Rathke's Cleft Cyst and a mild indentation into my optic nerve, but because at that time the only thyroid hormone that was slightly abnormal was TSH at 9.34 they said it couldn't be a microadenoma. I am getting rather confused and would appreciate your help please. Have I just got hypothyroidism or is there something else going on here? I know you guys on here are very knowledgeable, so thanks in advance for you help. Happy Easter to you all!

12 Replies

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  • I'm no expert on this but I would expect your t4 and t3 to be high if the sole cause of your high TSH was a microadenoma. A TSH-secreting microadenoma could increase your TSH but if your thyroid was healthy I would expect the rise in TSH to cause a rise in t4 and t3.

    It isn't unusual to have a normal t3 and low t4 with a slightly high TSH so your test results could well have indicated the beginnings of hypothyroidism. However, a TSH of 40 is not slightly high but significantly higher than normal and I would expect a much lower t4 and t3 if it was just hypothyroidism. Of course everyone is different but I suspect there is a possibility of a combination of things going on here. I would recommend seeing your doctor again and getting a referral to a specialist who should be able to tell you whether it's a microadenoma, hypothyroidism or both.

    I'm sorry I cannot give you a definitive answer but I hope you get some answers from your doctor.

    Carolyn x

  • any tSH above 5 is serious

    have you tried T3 or liquid thyroxine

    or NDT

  • Hi, Yes I was diagnosed borderline hypothyroid 7 years ago and I have never been on any levothyroxine preparations, because I have never been able to tolerate levothyroxine; I have a number of allergies (including corn pollen) I am unable to tolerate Levothyroxine. I recognise your user name I think we had a conversation a year or two ago, I am still not on any thyroxine at all. I have tried every thyroxine available in this country from brands with corn in them to brand with no corn, liquid solutions and tablets, T3 from Belgium on private prescription and NDT. I have been saying to my GP and Endo's (I have seen 4 different ones) for years that I think I might be allergic to Levothyroxine but they all say no you can't be because it's produced to be the same as the human body. This time last year my TSH reached it's highest at 13.7 and still the endo's would do nothing for me, now it's 40.32 and I am still getting nowhere. I have moved to a new area and have got an appointment with another new endo but I'm not holding my breath as to whether I will get anywhere. What with something in my head that I can't get a confirmed diagnosis for and my TSH rising rapidly, plus the fact that my T4 has always been normal up until the blood test this January I am at a loss what to do next. Let's hope the new endo is thorough and understanding, it would make a change in my experience. Thanks a lot for your reply. Happy Easter. Sharon

  • being allergic to levothyroxine does not surprise me I suspect it contains methylated spirits just as T3 does and despite it being a tiny amount its enough to cause problems in hyperallergic people

    its the same for me with aluminium

    I would think the only way you can cope with this is to obtain fresh pigs thyroid via friendly farmer /butcher mince it up and freeze it and take a small portion every day

  • This is all very interesting, I never knew that thyroxine and T3 contained meths, I will mention this to the new endo when I go and see him next month. I would look into the fresh thyroid side of live but I am allergic to pork, so I think that might scupper it. I will ask the endo about this as well. I've been saying for ages I need a good Immunologist, I went to one but he wasn't interested as my old endo had given him the wrong info - told him all my bloods are normal when they are far from that - I've got a complaint going through about her (my old endo that is) at the moment I've had such a bad time with her. Anyway thanks a lot for your help, you have given me a lot to think about. Take Care.

  • somewhere in the production of t4 and t3 methylated spirits is involved it was listed on patient info on uk T3 when my husband was on it

    He is hyperallergic to all chemicals .......I cant even open a bottle of methylated spirits way across a room without him feeling ill , if I have been treating the fence and strip off the outer layer of clothes outside he can still smell the fence treatment stuff

    He is fine on NDT but there is also a Bovine NDT from either OZ or NZ maybe that would be better

  • Hi, I'm the same can't stand the smell of meths, gloss paint, weedkiller, perfumes, anti perspirants, basically all sorts of things that have got a strong smell, including flowers - I can't have them in the house, all smells give me a headache and breathing problems, I was diagnosed with angioedema when I was in my 20's (I'm 54 now) but have never been referred to an Immunologist except that farce last year when he took no notice of me. I have been saying for ages if they sorted my allergy problems out then other things may fall into place, but nobody ever listens. Has your husband had a diagnosis or like me has he just found out as he has gone through life? Could you let me have the name of the NDT from NZ please it wouldn't hurt to try it after all I've tried everything else! Thanks a lot for your support.

  • To be honest I'm not sure, I do remember buying a brand off the internet years ago but not sure if it was this one. Can I ask have you got a specific reason for mentioning this - is it because you have had the same problems as me and have found that you can tolerate Tirosint? Thanks alot. Sharon

  • Since I got your message earlier I've read about Tirosint and think it would be worth trying as I have tried everything else! Only problem I have I can't find where I can buy it from, could you let me know please. Thanks

    a lot.

    Recommendations where to buy without prescription via private messages please in line with posting guideline #22, thank you.

    healthunlocked.com/thyroidu...

  • Thanks a lot for letting me know, somebody saw your post and messaged me to let me know where to get it from. I had a look and it's $150 for 28 tablets. I can't afford that kind of money every month so won't be able to try it unless I can find it cheaper elsewhere, I wish we could get it on prescription here in the UK but unfortunately we can't. Thanks a lot for taking the time to reply. Take Care!

  • I think you probably need to work on all your allergies, which probably stem from gut and mineral imbalances. A whole different world to investigate.

  • Hi Ruthi, I quite agree with you, I just said the same thing before I read your post to reallyfedup123, I think when I go and see the endo I will try to get onto the subject the only problem is that we don't have a lot of time at appointments and to explain what's been going on in such a short space of time what with the MRI etc; is difficult. I just hope that this endo actually listens to me, if he does and he knows what he's doing he should be able to work out that my allergies are probably at the basis of my problems - I HOPE! Thanks a lot for your reply.

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