Need help to finally get better!

Have suffered with this disabilitating illness for fifteen years now, probably longer but diagnosed. Have been on thyroxine, all that time and never felt much better, but have just struggled on as have been told by my doctor on numerous times my levels are normal, normal what the hell does that mean because I certainly do not feel normal by any means ! I saw a specialist early on because taking the thyroxine was also making me feel extremely unwell and certainly not well and was told by him that he was fed with gps sending patients like me to see him , and to just take the medicine gradually and not to complain, basically so I certainly did not want to see him again. After years of not feeling well my doctor did decide to prescribe Armour for me I was delighted however that unfortunately did not work out about 10 days after taking it , my doctor said stop taking thyroxine one day and take the armour the next, I was on 100mcg thyroxine and she prescribed 1/2 grain of armour equivalent to 50mcg of thyroxine I have since found out. I suddenly devoloped extreme panic attacks , i thought I was going to die ! So I decided th ditch the armour and go back to my other medication but I could not take 100mcg straight away so decided to gradually take it that was nine months ago and I am still trying to get back to 100mcg, I am experiencing extreme shakiness in my body, when i even take the dog out for just 20 mins my legs feel like jelly , my head feel very strange and I feel dizzy, i am very conscious of my heart beating feels quite fast but not to the extreme, basically I don't know what to do, i am persevering with getting back to 100mcg but I feel I am suffering with hyper symptoms now. I have never had my t3 levels tested and apparently they don't do it on the nhs. I have heard that if your adrenals aren't working properly the thyroxine you are taking is not being used as it should , I don't know i am so confused now I feel like crying all day long because I don' see anyway out of this complete nightmare.

Any help would be extremely appreciated does anyone know who DR B is would be very interested in her contact details.

10 Replies

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  • Hi there - just wanted to respond as you have no replies - this could be because this is not in questions but in blogs. I'm sorry you are still feeling bad, or even worse.

    Your doctor was being helpful prescribing you armour (not many do!) but it seems like he/she didn't know about thyroxine remaining in your system, so that may explain why the immediate addition of armour would make you go 'hyper'.

    Perhaps you could post again in questions, and add your blood test results so folks can have a better idea of how to suggest help.

    Meanwhile have you had vitamin/mineral tests like irons, ferritin, folate, B12 and Vitamin D? (for starters) as these tend to be low too, I can relate to the 'jelly legs' and wish I knew exactly what causes it too. You can also email Louise for a list of sympathetic doctors (louise.warvill@thyroiduk) Jane :D

  • Hiya ,

    yes thanks for your interest, no I have not had any mineral tests done, as I said before never had the t3 test done either,I have a few test results,

    Feb 2011/ TSH 1.25 T4. 13.9

    Feb 2012 TSH 2,56 T4 12.2

    then every thing went wrong when prescribed armour my results were TSH 58.69

    T4 8.9. I have since had another bloodtest but do not have the results I think the TSH was in the 20s still though, so that is why I am trying to get back to 100mcg of the thyroxine. Feb 2011 and 2012 are meant to be in the normal range , so I was mean't to feel normal but I wasn't. I am thinking of hopefuly trying to swe Dr Skinner in Birmingham, I know he is private but I feel I have waited long enough to get my health back to some kind of normality ! Its so nice to talk to people in the same predicament about it though because no one else understands what misery you are going through.

    thanks again, Julie.

  • Hi all as said but also it may well be low Free T3. Most Labs in the nHS not longer test for this. Years ago, it was always tested, my Hashishmo`s only showed in a low Free T3 test. I had armour for a long time,still owish in range. When T3 becme available I had that with the armour. Now ,I need my Free T3 to be just under the top of range, this is not very unusual. if GP cannot test you ,sometimes they can if you offer to pay ( usually about £10. Or, now , I have to have mine tested through Blue Horizon as the next cheapest test. My endo and i consider it essential. if you want details about the testing click on "reply to this" I will send you a PM regarding my wonderful Dr, B, endo.

    best wishes,

    Jackie

  • Dear Jackie - I just had a very upsetting appt with my GP. I don't feel right, have been on Thyroxin for 14 years. I asked if there were more tests she said that I couldn't believe info on rubbish websites and hinted that I was depressed. She just said her surgery does not do any other tests - live with it. Anyway I am now researching going private but need to find a doctor/endo who understands the T3 issue. I would very much appreciate knowing the details for Dr B too please. Thanks also for the Blue Horizon tip. I am looking at how I can get bloods done with them

  • Hi I am afraid this is common1 I suffered for years , then I found my lovely lady. I will PM you.

    Jackie

  • hi could message me to please i need to get well i have suffered anxiety/panic for 13 years now am on thyroxine but i have never felt well since being underactive, i would very much appreciate it x

  • Hi Kimbo, I have just sent you a PM,

    If you ever want to send one, you just click on a members name, in the Forum posts or on the list of members..

    Jackie

  • Hi again,

    Blue Horizon we use TUK for authorisation eg no doctors! thyroiduk.org.uk/tuk/te or their main site. They are quick, helpful and same Labs as all the private hospitals ( called TDL) they are about a quarter of the price. You can use any of their sites, they do all the NHS tests and a lot more and as well known good to show a doc for treatment. Quote TUK10, I have th intermediate test + ranges, which is TSH, T4 and Free T3. I have had other tests sometimes to. Easier to phone the first time If you quote TU 10 ) is £61. I have had other tests too. The results to you e mail within 2 working days. Paul Harrison , MD very helpful with queries. Their Harley Street doctor always checks the results, anything outstanding! they let you know too.Only post on Monday to Thursday,, because of our bad postal service, you do not want stale blood!

    Jackie

  • Please could. You give me details of your endo .thanks

  • PM on the way.,Lizbeth.

    Jackie

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