When you feel so unwell for so long, apart from becoming very stoical, when you've spent so much money, seen so many people over the years and you never feel anywhere near 'right'....you just put up with it and accept less and less... but It all piles up. I'm feeling very low today and surprisingly emotional ..crying a lot..feeling pretty overwhelmed.
Something has triggered the camel and straw snapping syndrome with me today.
I guess I'm brim full.
Fed up of everything really.
I feel abandoned. My hospital notes were lost in 2019. Due to Brexit my exceptionally brilliant Italian specialist decided to return home to Italy in late 2018...since she left I've only had a single pathetic, superficial, lip-service letter from her dismissive head of department. My excellent, since retired GP wrote to the same head of department 4 times from last autumn to just before lockdown and he's never once had any response whatsoever. He incidentally is absolutely shocked at the professional discourtesy apart from anything else...
The surgery has this January had also skewed the system so that T3 and T4 blood tests are no longer available.
Just before lockdown the paltry blood tests I had had done, the TSH only of course came back as 'high' (my blood test copies are at my Mom's at the moment. She has a file on me as thick as a tree trunk- don't know what I'd do without her!)...
A new GP bless her tried to be as reassuring as she could and in typical fashion focused totally on the TSH values, to the exclusion of everything else... Nothing new there...She didn't know anything about my long history and the phone conversation was just ticking boxes... Useless really...
And then today I read something rather interesting by chance, that I shall have to go back and mull over again...to let it all silt down in my turbulent brain! It refers to the connection between mumps and thyroid issues, one particularly rare in occurrence! Could this be it? Could this be why everybody I see is baffled by my poor response to medication? Is it because they don't understand the true nature of my thyroid dysfunction?
I had actually have mumps at about age 6.
Then at 15 I caught scarlet fever and had a very bad time of it...and at the tail end went down with mumps for the second time!! The doctor could not explain it any other way, he said it was mumps again!
Then at 38 from a blood test I was informed I actually had Epstein Barr antibodies too! But 2 years before I had been so ill, I'd spent the entire summer out in the garden everyday, laying on a sunlounger under a blanket, being read to by my mother for months, for having such exhaustion I could hardly lift my head...
So, I've got to bite the bullet and find the funds from somewhere to pay for private blood tests.
I presume Blue Horizon is the best service. I am Hashimotos. I have at least 17 food intolerances; I have to avoid totally, gluten, dairy soya, all forms of legumes, grass fed meats, beef and lamb, book choi, fennel, celery, etc... food packaging becomes an obsession. After ingesting gluten in particular I can be ill for up to 6 weeks. It's a nightmare.
I had a horrific response to levo. My then GP made me take it for over a year, choosing not to believe me!!! Long story short, I became severely thyroid toxic; so eventually I was allowed to try Armour, it would have been easier to get a private audience with the Pope! But my results were not brilliant; again my diminished improvement dwindled over time but without producing the dreadful reaction levo did... So I eventually tried gentle bovine thyroid replacement. So far it's been the most benign...but I'm still not right. Clearly its downhill from this point on! I never see any real improvement...It's only my iron will that keeps me functioning and doing all that I do, but today on this beautiful peaceful day, I feel the cracks are really starting to show.
And that's me, here today..
My digestion/absorption/vitamin situation is so bad my GP fears I could be on the verge of malnutrition most of the time, my diet is so restrictive!
My question is, can I get away with just T3 and T4 test for now, or should I also do a cortisol test too; I do have adrenal fatigue..
Many thanks for taking the time to read my edited list of woes.
Poppy the 🐈
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Whilst I sympathise entirely with your predicament, I fail to see what having mumps at six years old, has to do with the way your thyroid is treated now, all these years on. It may have triggered your Hashi's - probably did - but Hashi's is Hashi's, and there is no treatment for that. And, doctors understanding what caused it, doesn't mean they have any different way of treating it. There is no treatment for Hashi's. All you can do is replace the missing hormone as your thyroid is slowly destroyed.
So, I could be wrong, but it seems to me that that is what you need to concentrate on.
We all know that doctors have no idea what they're doing with thyroid hormone replacement, which is why we hypos have to learn as much about it as we can. You don't tolerate levo. OK. So, how are you doing on NDT? Is that the solution for you? Are you being prescribed NDT? Or are you buying it yourself? How much are you taking?
Just testing the TSH is, of course, pretty useless. When taking T3 we need to test T3 - which is so obvious that we really have to wonder if the NHS has all its wits about it! I expect the answer is no. So, as you don't need to know how well you convert, just testing FT3 would give you a good idea how well you're being replaced - that and symptoms, of course. Would that be possible? We all have to cut our coat to suit our cloth, so if we can't do a whole battery of tests, just the FT3 is better than nothing. And would tell you if you need to increase your dose or consider reducing.
As for cortisol, you say you know you have adrenal fatigue. Is that an official diagnosis? Or just a deduction from a saliva test? What have you been doing about that?
And, how about your nutrients? Are you taking any supplements? Do you have any test results for those?
If you can answer all those questions, then we might be able to see a way forward. But, don't let the way you feel today get you down too much. These are strange times we're living in - unprecidented. There is no road map for how we're supposed to feel nor how we're supposed to behave. And, it's getting to a lot of people, whether they have thyroid problems or not. But, it's bound to be worse for us, isn't it? We don't have solid good health to back us up. We just have to draw our horns in, take a deep breath and be as kind to ourselves as possible. We've all been fighting a hard battle for a long time, so we're not going to give up now, are we? A brief pause, and then we battle on. xxx
I have had mumps, scarlett fever, german measles, measles and chickenpox because I was born in the 50's before the MMR etc. I don't know if that caused me to become hyperthyroid at 48 ... probably not. A lot of us have had horrible experiences with thyroid disease and being untreated by doctors and over treated as in my case when I first saw a Endocrinologist. You can read my story if you are interested it is on my profile if you click on it. Perhaps you should copy and paste your experience and put it on your profile so members will be able to read what you have been through. All I can say is don't give up hope I have felt very ill and sat in front of my GP in tears just to be sent away with no treatment but offered counselling and antidepressants when all I wanted was Levothyroxine. I then lay in bed for 2 years because I didn't have the energy to do anything else. But now I am feeling very well and if I am being honest I don't know what I did to get my health back. This site and it's members are here to help people like you and me who are not getting the support and treatment we should be getting from doctors who don't seem to know very much about thyroid disease. If I hadn't joined Elaine Moore's site in the US over 10 years ago I would not have found out that I actually had thyroid disease not the menopause like my GP had told me. You need to keep trying to find out what works for you and a lot of people do get on well with NDT. You do need to do a private blood test if you can I usually use medichecks because the NHS only test the TSH and T4. I am sure things will get better once you get the right treatment.
Aw Poppy, I am so sorry you're having to deal with so many awful things. I truly hope you get the answers and help you need. Good luck with everything and I'm wishing things turn around for you soon.
A little while ago i found a couple of your old posts which cheered me up immensely.
I'm not capable of sending you a lovely picture in return , but i am sending you a very big cuddle from morecambe bay (((( )))) where, in a few hours we will have a beautiful sunset, we get lots here and they are all free, everyday
You are allowed to feel utterly fed up and hopeless, sometimes we need to.... .
sometimes we need just sit under a hedge and cry.
sometimes we need a hug.
And then, sometime soon,
there will come a quieter feeling,
a blackbird in the morning,
some gathered spirit of survival and ability to keep walking on,
And so you will .
towards turns in the path that you cannot yet see round .
Where who knows what you will find to make you smile.
XXX with love
Tat
ps. Beg ,borrow or sell your cat for the money for a T3 test , then at least you may feel like you are in the driving seat , even if you don't know where you're going .
I never know where i'm going , sometimes life's more interesting like that
So sorry to hear how bad you’re feeling Poppy the Cat. I hope you can get the tests you need and the supplements/hormones you need. This time we are going through is tough enough without feeling so unwell all of the time.
Hi Poppy I’m halfway thru a book by Paul Robinson called ‘Recovering with T3’ it’s excellent. Well worth a read. I would highly recommend you read this book. Stay safe and get well soon.
Please try an anti parasite cleanse it changed everything for me I take bovine thyroid and it is the best the pig derived causes allergic reaction since pig isn’t good for anyone...I also follow the blood type diet but most importantly do a parasite cleanse look up symptoms I’m sure you hav eso me of them
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