Okay, as promised I said I'd let anyone interested know what the TRH test was like. It was fine really, apart from the registrar messing about and not seeming like he knew what he was doing!
The only effect I felt was needing to have a wee, which passed quickly, apart from that I felt the same as usual. I had a cannula fitted and blood taken, then the hormone was given. I had more blood taken 20 minutes later and again at 60 minutes later and then just had to wait 10 mins to make sure I was ok to leave.
I have been given the results this morning and have now been told that everything is normal. My endo says that all my results are normal(he'll send copies) and he can no longer advocate me being prescribed any thyroid hormones.
Obviously I burst into tears, making a right idiot of myself no matter how much I tried not to. He was very understanding and said that he can't be 100% but from the tests this is the only conclusion he can come to, the TRH is the gold standard in tests.
He said I can seek a second opinion(what's the point) but will ask my GP to refer me on to a CFS specialist again(I'm welling up at the thought, last time was useless).
So I guess my GP will no longer prescribe T4 let alone T3 for me and I'm left feeling awful after being on no meds for 4 weeks. I have a couple of weeks supply let of T3 and started taking my old dosage (10mcg twice a day) straight after my TRH test.
I'm trying to be positive and see this as a fresh start after the last 3 years of going backward and forwards with this test and that, now I can do what I think is best.
Okay, so I am going to try T3 only, so if anyone could message me with where I can buy this privately it would be appreciated. I'm also going to continue with my D3(on prescription) and start B12. I'd also like to try adrenal supplements but now being a vegetarian for the last couple of months, don't really want to take anything with animal hormones in. Is there anything else I can try?
I will go ahead with seeing a new CFS specialist and try to research the use of T3 in CFS and Fibromyalgia, in the hope I may get T3 prescribed again. But no more bloody tests or coming off medication that is helping me to feel better!!!!
I'm taking control(I hope).
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DeniseR
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Your brain really is muddled isn't it - I messaged you a while back with the information regarding buying T3. If you have lost it let me know and I'll message you again with it.
So sorry you have still not resolved your issues and have had no luck with the NHS tests. I really would back track and look into getting tests done in America for Lyme's - it seems that its the only place where a decent test is available. Really don't know if this can be done by post but maybe will be worth while looking into it. Your situation really does remind me of Nat, who used to be a member on this site, she went to hell and back going for this test and that and it wasn't until she had the American test done for Lyme's that she finally got to the bottom of her symptoms.
Message me if you need anything - and that includes support.
Oh god Moggie, sorry! In a bit of a state right now. I will look now, lucky that I can still remember my own name lol
I am going to get some tests done soon. I don't have the money right now but am waiting for some compensation from dental negligence(whole other story) and am planning to use some of that to get what I need, tests, meds etc.
I hope to get the better Lyme test, as well as reverse T3 and the saliva adrenal that I couldn't afford before.
Very busy at work at the moment Den - Harvest time!!!!
Now looking into Paget's - its so easy to blame everything on thyroid issues isn't it Den and it comes as a bit of a shock when it is something totally different.
Oh yes I forgot you get busy at this time of year!
Wow, that's a new one. What's pointing you to Paget's?
Yes, I'm still not convinced it's not my thyroid, as we all know(as the endo admitted), these tests aren't 100% and they only go so far and don't look at the cellular level. I was disappointed I guess as it fells like after 3 years I'm back at the beginning but at least I do know that T3 can make me feel better so I will try that with a few other things and see how I go.
Let me know what's been happening with you Moggie when you get time
I have a hell of a history of Paget's in my family from my mum, and three out of the four of her remaining siblings, to her mum and her mum before her. I can actually trace Paget's back four generations so don't think there's much hope for me that I am wrong on this one.
Paget's is all about your bones thickening, in other words more calcium is needed in your body to meet the demand. When the Paget's is active (it has periods of activeness) your parathyroid levels raise, as does your ALP levels, to meet the demand of your bones calling for more calcium (both of which I have raised) and your vitD drops (again as you know I have a history of low VitD). So putting my blood history and my family history together with the unexplained bone pain I am getting, plus having had a long chat with a specialist nurse who has stressed to me, in no uncertain terms, that my endo MUST be told of my family history I am almost certain that my parathyroid and VitD troubles are Paget related.
The thing that really pee's me off Den is that about a year ago I had raised ALP levels and the lab had written on the test result "probably bone in origin" and it starting ringing alarm bells with me regarding Paget's so I told my GP of my family history who - yes you've guessed it - totally ignored me.
Also I can't understand why the endo hasn't started thinking along those lines (amazingly it is an endo that deals with Paget's - why I haven't got a clue as it is a bone disorder) as he is looking at the same blood results as I am, but to give him his due's he doesn't know about my extensive family history in the disease so I am writing him a letter today to put him in the picture.
I am doing a 24hr calcium/creatine ratio test on Sunday to see how much calcium my body is, or is not, losing. If its a parathyroid issue I will be losing lots of calcium but if its Paget's I will be losing hardly any.
Hope you have been able to understand all the above but I think the most important thing to come out of all this is that if I hadn't have done my research and put two and two together it may never have even been considered by my GP or endo, which is about right for the NHS isn't it Den. Bloody marvellous when you have to write and tell your endo what's wrong with you isn't it.
Another thing that hits home to me is that if I hadn't shaken myself out of the mind set that ALL my problems are thyroid related I may have missed it myself. I am 53 Den and, by the law of averages, I will have other illness's starting to creep up on me which wont all be thyroid related and an open mind is needed to sort out what is and what isn't.
Sorry for the VERY long reply - hope I haven't bored you to much.
Thanks for explaining, I did try to look it up but felt my brain power wasn't quite up to it at the moment lol, so that was perfect for me to understand.
I still don't get how a 'specialist' doesn't look at all of your medical history!!! At least this would give them a fighting chance of working out what's going on.
I do think about other things, especially as the menopause is likely to start creeping up on me before long but I was just so sure there was something thyroid/adrenal related going on.
Well like I said, I'd still like to get some more conclusive tests done, especially the Lyme. For now though I feel I finally have the chance to try what the endo wouldn't, which is T3 only and because I presently have all meds out of my system seems the ideal time.
I've put myself back on my previous dose of t3 and will wait until I start to feel better, then when it's effect don't seem as potent I will gradually increase. I'll also add in vit B and vit C along with my vit D.
I'll go and see another CFS specialist etc but I will be trying to get myself well in the meantime. And that's the plan lol
I hope your test gives you some answers,I'm assuming Pagets can be treated and managed, therefore you may finally get well
That sounds like a definite plan to me - don't forget how important iron is when taking T3 (don't know whether you are low in this or not). Lets hope T3 only works for you but please be careful of your heart issues wont you - don't ignore it if it start to become erratic again will you.
No cure for Paget's but the process can be slowed down with tablets or infusions - infusions seem to work best but knowing the NHS and budgets whether I will be offered these is another matter, although that wont stop me from pushing for them if I do have Paget's.
Please let me know how you are doing Den and I hope that you will be able to have the correct Lyme's test soon.
Have you considered trying that organisation that picks up the pieces when the NHS has failed to make a conclusive diagnoses? I have the link if you want it - don't think you've got much to loose now have you.
That doesn't sound great but I'm sure it will feel good to know for sure. Well at least after all this you're well equipped to fight for what you need lol
What organisation??? yes please, I'll defo take a look.
I'm not sure about all your background Denise- but I'm sure the RT3 test, cortisol and Lyme could all be useful.
I had them all pushed aside when requested as we all know here the response from the medical 'system'. I've had red weals that wouldn't heal etc from insect bites needing antibiotics more than once.
When you look at the trouble people have just getting a standard type of protocol going with our basic thyroid hormone, which governs so much, it's no surprise that anything more 'off court' that intrudes blows the system [we've paid to use] apart.
I'm also interested in veggy adrenal support as I'm still not totally sure mine's been checked enough.
Keep on fighting- there's many on here that don't post or fly their problem- but still share your journey.
the only 'veggie' adrenal support I know of is 'isocort' (can buy from amazon.com the american amazon) which is plant based cortisol. Many find that useful.
Also high doses vitamin B complex and high dose vitamin C is good for adrenals x
I did have the short synacthen and lyme blood tests but as we know these are hardly accurate, so will get the more accurate ones done as soon as I can.
Just want to know what the hell is wrong with me, I don't think it's too much to ask and if the docs can't work it out I guess I'll have to keep trying myself. Good luck with your journey too x
So sorry to hear of all your troubles - it's a huge roller coaster? I wanted to add in the mix for you that it may be a cell level problem. As I understand it cells need all the right nutrients and can also be blocked by environmental toxins. You need to think about your own exposure, Particulalry things with regular exposure. Have a look at this section on Dr Myhill's website. I think you can buy a test kit from her, then she replies.
That's what I'm still thinking and even the endo admitted that they just can't look this far into it, so he has to follow the tests they can do.
I'll definitely take at Dr Myhill's site and this area. I've been on the site before when I was first diagnosed CFS/Fibro but it was all too much for me to take in at the time.
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Free t4 question 
secondary hypo and doctor questioning diagnosis
Hi all I haven't posted on here in a long time but I need some advice. I had to change doctors and they took me off T3!
Endo app 😢
My Endo didn't listen to me, what do I do?
