Feel like this is the only place I can say what's happening and how I feel. Kind of reaching the end of the road.
Endo just phoned to say all tests are normal - Selenium - well in range, prolactin normal, Lyme disease - negative(although he did say it doesn't mean a future test wouldn't show a positive). Strange thing is, I actually found a tick in the back of my car yesterday! How ironic. Wish I could afford to pay for a more accurate test.
He hasn't had the MRI report but had a quick look and all looks normal but will wait for the report.
He has also received my original blood test results from my Gp which says my TSH was in range and my FT4 was 10 range (10 -23). I was diagnosed borderline at the time.
He says he can't justify treating with normal ranges and will do one final test to determine if there's an issue. I have to come off all meds for at least 3 weeks an then have a TRH test!!! I want to cry but know it's the only way to tell how my thyroid is now working and get an accurate TRH test.
If all is normal it is up to my Gp to decide whether I can continue on thyroxine and liothyronine. I told him if I feel the way I used to, I will get the meds myself if I have to. He said he didn't want me to do that and would advise a second opinion and maybe look further at the CFs/Fibro diagnosis.
After this test I think that's it with the docs. I can't afford to pay for my own meds but will find a way to try T3 only and just deal with my own health.
I'm under a lot of pressure at the moment, stupidly trying to do something wit my life by starting a new business, so absolutely broke and stressed trying organise everything but was feeling very positive. Now I'm totally terrified that I'm going to end up bed ridden with normal bloody test results!
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DeniseR
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Hi Hayface, for some reason it won't let me reply to this so hope you see it.
Yes sorry, I forget that not everybody has seen my previous history, blogs, questions etc.
I have had my FT3 tested several times.
Basically I had pretty much everything tested. FT4 and FT3 low but in range, TSH now below 1 on 50mch T4 and 20mcg of T3.
Just been put up to 75mcg of T4 with 20mcg of T3.
And on Fultium D3 for low Vit D
Everything else seems to be normal, although have had low glucose and sodium results several times previously, doc says means nothing. Endo originally said I might have a reverse T3 issue.
Thanks
Glad you're on T3 if it's low that should help Maybe they need to up your T3 dose as well?
They definitely won't increase my T3, I already increased it myself from 10mcg to 20mcg, which they weren't happy about but since my last blood tests okayed it! lol Now they're saying it might not even be a thyroid problem!
Don't let him fob you off with a CFS diagnosis. That just means "I can't be bothered to do any more tests". Hopefully you will be able to persuade him to give you the meds you need.
Thanks Rosetrees, feels like I've almost come full circle! I'll try my best but if not I've resigned myself to trying T3 only on my own I think x
His comments about Lyme Disease suggest he knows the test in the UK is RUBBISH! You need the Western Blot test. My daughter had one done in the USA earlier this year and they actually grow a culture to check which bacteria are causing problems. We are still awaiting results of the culture, but the initial test came back positive. We are light years behind the USA in diagnosing this problem which I believe is now huge in this country, but the NHS is using out of date diagnostic techniques. If you feel you have a problem with Lyme Disease you might find this site useful:tiredoflyme.com/
Also it's worth reading Dr. Neil Nathan's book On Hope and Healing and watching this video:
Thanks Jane I'll take a look. I've read quite a bit on it but I don't know whether I'm coming or going anymore lol It could be Lyme, could even still be adrenals??? If I'm well enough to make my business work I just may be able to save enough to get all the proper tests done x
I wish you the most possible good fortune with your new business. It is a very brave venture given that your health is not at its best, but hopefully all will go well for you. I really recommend Dr. Nathan's book - it's been a revelation for us. Jane x
Jane I cant believe what you have noted about Lyme D, I was bitten by a tick two years ago and then becam ill months later, I had the lyme D test here in the Uk at it was normal, I know something triggered of my Autoimmune D. I went to a and e with a red rash and painful ankle as if I had been stung by a bee,
thanks x
Just another suggestion to throw in the mix but have you had an adrenal test done? Low cortisol/DHEA can affect the uptake of thyroid meds. If you are experiencing a lot of stress you may have adrenal fatigue. I am told the saliva test is the most accurate - genova diagnostics will do it privately - not sure if GP/Endo will do this.
I did get the saliva test before after seeing Dr P but then couldn't afford to go ahead and send it back at the time. I had the synacthen test at the hospital but as expected that didn't show anything. I need to save up for all these tests I think and then treat myself as the docs don't even take any notice of most of them lol x
Hi Denise -first of all big hugs -you have all my sympathy.
I too was diagnosed with CFS/ME and my thyroid blood tests came repeatedly back within range. Eventually my TSH did jut tip over the maximum bt 0.1 and they started to treat me (long road but I too ended up on private treatment...before finding theway back to goodish health). I know you must feel really down and fed up with the lack of progress but please don't give up -sadly I am afriad you are going to have to stand your ground with these medics -picking carefully your battles and reading up so you are really well informed. This is not easy I know when you feel so poorly.
Have you looked at Dr Lowe or Dr Peatfield's books -I believe (correct me if I am wrong Thyroid UK) but they have a book loan service -but if not Thyroid Patient Advocacy definitely do. Dr Lowe found that many people diagnosed with CFS/ME have a combination of metabolic disorders -very often thyroid and adrenal insufficiency - once these were treated the vast majority of people improved their health. You will have found out already that unfortunately many doctors these days (whether GP's or consultants ) run by the results of blood tests. this is wrong -they should be looking at your symptoms and treating accordingly, using blood tests to back up not instead of. When you are 'borderline' or low bit in range in thyroid hormone blood tests many docs won't treat because they believe the TSH result is the gold standard -this is their opinion! They are not able to substantiate this (Rod -am I right? Don't want to misinform her!)
The fact they have put your on t4 & T3 means they do believe there is a problem -so please don't let them fob you off.
Have you had your B12 levels checked? Make sure you get print out? Low B12 is common in under active thyroid and also in CFS/ME B12 helps you to absorb thyroid hormones better (amongst other things) so really worth checking.
The doctor that I see says that underprescribing is the most common reason for people still feeling poorly. Some people do need to have a very suppressed TSH result to feel well -I am one of those -mine is always 0.02 but any higher and I feel ill. Dr Toft's book is good for showing medics to argue your point!
I really appreciate all that you have said. I've tried everything and presented all the information you suggested but he believes what he believes I guess. He is trying but when he doesn't agree with certain things there's no convincing him, no matter what I say.
My B12 is around 350 something on last test, so in range although I know it could be higher and my vit D is slowly going up since i've been taking D3.
I've actually since Dr Peatfield, I did some extra work and it cost me all of the money I'd earned. He said my adrenals were shot and I started on a programme he gave me but I couldn't afford the adrenal test at the time and I knew I couldn't afford to keep taking so many meds (nutri adrenal etc). Around the same time I had my second endo appointment and he offered me T3, so I decided to try that instead. I felt amazing for a couple of months but then think I really overdid it with exercise etc and gradually my symptoms returned. The endo reckons anyone taking T3 would feel better for a while, so can't explain why it's not working as well anymore and won't let me try T3 only.
I think I'll try and get a second opinion from another endo maybe if it comes to it.
Thank you so much for listening and caring, it means a lot X x
no probs -I think everyone on here knows what is it like to feel like there is no solution and to hit a brick wall with docs.
Two other thoughts that struck me reading your reply:-
1. Re adrenals being shot. Have you tried the CT3M approach that Paul Robinson has developed? he describes it in his book 'Living with T3' but also on his website. i reckon if you go into users on this site and put his name in you will find his links. I use this method because my adrenals were not very good. It is not a quick fix (nothing is, is it sadly!) but if you are patient and follow his guidelines carefully it can work -it certainly has for me. The main idea behind it is that naturally when your thyroid is working fine it would kick a load of thyroid hormones out in the early hours -this would help the adrenals to work to produce what they need. The theory is that when you thyroid doesn't work and you have to take medication then your adrenals don't get the early morning surge they are used to as we don't take our meds in the early hours so you take an early morning dose of your T3 meds to replicate what used to happen naturally. It is very powerful method -so you do need to be careful that you don't take too much T3 or take it too early. This is a no cost method of supporting your adrenals.
2. B12 level. You are right your B12 is too low -even though you are technically within range the PA society that I mentioned to you want the guide lines to be greatly increased. They would suggest you should get your B12 well over 500. You can do this sublingually you know if you have an absorption problem by popping appropriate designed tablets under your tongue -I use Jarrows. You might want to wait as they are investigating this and probably don't want to skew any further blood tests by taking B12 -I just thought I'd mention it to you.
Paul Robinsons method was what I was thinking of trying if I go it alone on T3 only but I didn't understand it very well until you just explained
I agree about the B12, I keep meaning to get something to raise it but having constant tests, I didn't want to influence the results by taking anything else. This is the last test, so if nothing comes of it I am moving to the next step I think - dump the doctors and try T3 only with added B12.
You're so right, this seems like a good solution for me to try, thanks again!
Denise -you are right re the B12 tests -wait till they have finished testing as if you take b12 supplements they definitely will skew the results -might as well wait a bit longer.
Make sure you ask for copies of all test results and don't just accept their explanation -you ere entitled to copy of results -there shouldn't be problem but some medics get a little sniffy when they are asked for.....just be nice and ignore! x
Denise -you are right re the B12 tests -wait till they have finished testing as if you take b12 supplements they definitely will skew the results -might as well wait a bit longer.
Make sure you ask for copies of all test results and don't just accept their explanation -you ere entitled to copy of results -there shouldn't be problem but some medics get a little sniffy when they are asked for.....just be nice and ignore! x
Wavylines, love the name, interms of jarrows, I am reading your post that this is being invetigated? I have high cortisol dhea any suggestions? nobody is looking into this appreciate any feedback, currently going to start t3 as eltroxin didnt suit.
Am not that well up on high cortisol/ dhea levels - my meagre understanding is that your cortisol levels can go up when you/your body are stressed -sorry that is not very helpful to you I know. There will be others on here who can advise you much better than me. Sorry I can't be of more help.
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Getting ON , - but trying to Keep Healthy..!
Looking back on my thyroid journey, a success story and motivation to keep on fighting :)
Is it normal to feel like this? Sorry to post again
Help please
