Low temperature

erin said:
@Wonko my GP here in the UK gave me all these tests (full thyroid panel) at my local surgery. Initial thyroid investigation they don't mind giving; all the tests, but later they don't want to measure everything unfortunately. Can you not go to your GP and mention all your problems. They are usually very keen in the hope that one doesn't have ME, that it is a misdiagnosis of thyroid problem. So they go for all the tests initially if you moan a bit.

Then, it usually that transpires one has the thyroid problem on top of ME...

Worth a try? I think £160 is worth keeping in your pocket?
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Mine won't :(

Since she gave me the ME diagnosis she has refused to give me any tests not ordered by a consultant, and has refused in all but two cases to refer me to any. Even to get a diabetes diagnosis I had to buy both urine test strips and a BG meter - she tested once, before I was diagnosed with ME, and then refused to test again, even using a BG monitor in the surgery, until I bought her evidence.

I did once manage to get her to do a TSH test, which came back as "normal" according to her, pity that I hadn't asked for one, I asked for testing for parathyroidism - as I found out my father had it, and I'd noticed calcium channel blockers did weird things to me, my thinking was probably wrong, but I considered it worth checking.

So...we have an interesting but not very enlightening relationship. She is primarily there IMO to supply me with painkillers, she's no use for anything else. Even with my type 2 diabetes she does nothing apart from book appointments she knows it's unlikely I can attend (presumably she gets paid for each), simply ignoring when I informed her I had become severely intolerant to the meds she insisted I took, I was not offered any other options by her, a diabetes nurse from the hospital took a look at my results, referred me onwards herself, and they fixed the problem (well apart from one side effect but I'm still trying to work around that).

She is not a good GP (IMO)

But yes...it's a lot of money, for something that will possibly tell me nothing useful, I'm hoping for "certainty", one way or the other, and an idea if using NDT or importing T3 is a good idea, whilst I would probably send my GP a copy of the results, if they say anything interesting, I'm not expecting her to actually do anything useful with them.
 
A different GP at the same practice might be worth a go.

However, my GP is helpful, but the problem is the lab. Unless a patient is already on thyroid meds they will only test for TSH. Even when the GP asks for the full set.

So even if the GP is prepared to help, the lab can still scupper you. Mind you, different areas probably have different rules.
 
So....much less hassle to just get it done privately, even if it costs a months eating money for me and the cat. Money will only become problematic when I am informed that I have lost my PIP tribunal, as at that point I will probably be asked to repay 6-7 months of SDP, which would come close to taking me below my funeral budget. Until then, even without any income from PIP itself, I'm doing okay money wise.
 
I have ME, even if she was cooperative the level of practical care she would be permitted to give would probably be not much different, at least until the NICE "guidance" changes in my favour. There is no guarantee any other local doctor would be any better, especially given my aspergers and difficulty making myself understood to a stranger, one to one, the potential gain/effort ratio is simply not high enough, it's been considered multiple times before, over the last 15 years, it never stacks up.

I have a much more immediate problem in June, when my ESA is up for re-assessment, last time was a fluke (3 years support group), I actually got assigned a sympathetic doctor by ATOS, the chances of that happening again, small to non existent IMO. So it'd be WRAG, which would be undoable.

So...things which, even if successful, would only be likely to actually pay off after 6 months from now, not worth wasting resources on.

I'm still trying things, trying to figure out how to get even small, short lived, improvements, for when I need them, or figure out how to be at least more comfortable. I haven't totally given up, but things look....bleak.

edit - sorry - I seem to be a little negative today/this year, feel free to ignore, I'm not expecting anyone to solve my problems for me ;)
 
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Wonko said:
sorry - I seem to be a little negative today/this year, feel free to ignore, I'm not expecting anyone to solve my problems for me ;)
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Well, I can't count the times your posts have cheered me up and everyone feels a bit negative sometimes. I just wish there was something I could actually DO apart from trying to suggest things..... :hug:

ETA - we need a non smiley hug emoji!
 
Invisible Woman said:
One last suggestion - have you ever had an advocate? Is it worth trying to find one who will come to appointments and liaise on your behalf?

ETA - including with DWP/ATOS
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Yes, several years ago, from possibly my 3rd or 4th unsuccessful DLA application, all she did was come to my home and write down what I said, which given what I said had previously not worked......I asked for someone to help me with the forms, I suppose that's what I got, but at the time, the physical writing, not the main problem. Totally useless in other words, not what I, or probably anyone else, needed.

That "service" closed down, due to funding issues, before the forms were completed, as far as I know there are no longer any advocacy services in my area, my local CAB is useless, or was, on this sort of issue e.g. no attempt to help me with a DLA form until a full medical report was obtained from my GP, who would get her info from me, write selected non useful bits of it down and then charge me £70 for the privilege.

But okay, yes, I will give it some thought, and attempt to look into it - although I am running out of year, it's only the 2nd and I now have several tasks "booked".:wtf:

ETA - the above may seem ungrateful to the advocacy service, a fundamental problem is that I am pretty useless as my own advocate, even to explain things to an advocate (*if I could do this I wouldn't need an advocate), I needed someone who had experience in coping with that situation, at reading the underlying issues, and translating what I said into a form that the DWP could understand. I didn't get such a person.
 
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@Wonko I've no suggestions. Just want to say that you cheer me up almost daily, even with a simple, "like" of something I've said. You make me feel understood and not alone. I love your sense of humour, and your cat tales. Bring us your misery and worry, your bleakness. Don't be alone with your fears. Many of us share them. :heart:
 
The test was ordered last night, despite my being aware of vouchers suddenly expiring, rechecking when @Arnie Pye mentioned it, and being certain I'd checked several times and remembering a date of 28/1/2018 as the expiry date, when I looked at it around 10.30pm it said expiring today (as in yesterday), so given it was a saving of £34 I went for it.

At least now it will, at some point, happen and I will know :)

ETA - it seems the online info was wrong, they are suggesting I can use my local hospital (200-300m away) for the blood draw, which will save me an estimated £25 in taxis and I can probably also do a blood draw for tests my GP wants at the same time.

Less hassle/effort = good.
 
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@Wonko, bit off topic for this thread, but you mentioned benefits above. Concerning WCA etc, consider contacting Fightback4Justice - they're on Facebook, you can get contact details there. One of their advocates came to my Tribunal (reasonable charge, so reasonable I paid more than asked for, plus travel expenses). I just wish I'd got in touch for their form filling service when I first got the PIP form! They'll do it over the phone, I imagine they'd do it from email communication too. They were near enough for us to visit them so we did. Lovely people. I think my year's membership has just finished, thinking I may keep it up (pay monthly though can cancel at any time) as they help so many people, including free help and advice. Hopefully I won't need their services again for around 8 years.
 
Im sorry i cant read through the thread today, but Dr Myhill is having her patients take their temperature up to 15 times a day to see if they need thyroid or adrenal glandulars. Consistently low temps with little variation means you need more thyroid hormones and wildly fluctuating temps (normal fluctuations are up to 0.9 over a day (F)), means you need adrenal support. Most people need both.

I'm going to be getting into this some time this year, along with a keto paleo diet. Apparently the PK diet, or even just low carb will make you really ill if thryoid and adrenals are out of whack as your body will struggle to burn fat and finds it easier to burn sugars.
 
Justy said:
I'm going to be getting into this some time this year, along with a keto paleo diet. Apparently the PK diet, or even just low carb will make you really ill if thryoid and adrenals are out of whack as your body will struggle to burn fat and finds it easier to burn sugars.
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Yeah. I used to have success with both low carb and fasting, can't do it now, I assume my "willpower" hasn't altered that much so.....
 
I got the test kit on Saturday, the weather forecast suggests that even at 7am tomorrow the temperature may be enough for me to be able to breathe, so I'm going to try and get the blood taken.

What's throwing me is the complexity, I will probably need to stay up all night to be able to get there for just before 8am (when they open), the hospital does all their tests in the morning which is why I normally go at 4pm ish, but apparently that's no good for an accurate TSH, so go out in the dark, into a possibly hostile atmosphere (I mean that literally lol), get there, hang around, probably in a room full of people, for an indeterminate amount of time.

Try and get the medichecks test done, and an NHS one, figure out how to package it, get another bus to the post office, send it, as well as some CBD to a friend, as well as try and get the PO to accept my warm home discount letter with different ID, as I'm going to be there I might as well try.

Looking like a bit much for one day, especially after a night with no food (eating apparently affects TSH), no sleep (only way to be functional at that time in the morning), and at least 2 prologued aspergers unfriendly transactions.

But hey ho.......

Probably won't happen, I'll either get to 6am and think sod this, or I'll get outside take a couple of breaths and decide it's not a good idea etc., but if I'm missing, or more odd tomorrow..........you (dear reader) know why ;)

(even if everything goes well I'm liable to be a tad stressed and freaked out, possibly with a bit of euphoria thrown in, always a dodgy combo if people want me to make sense or be rational)
 
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Wonko take some food with you to the hospital, you need to eat after giving blood. I guess you can eat at the hospital afterwards.

I get my thyroids checked every 3 months. I take my food, I hate eating at hospital canteens and usually they don't have decent gluten free stuff.

Good luck, I hope you have normal results.

:hug:
 
@erin

Thank you but I'm hoping for abnormal ones, anything to give me a partial explanation, partial treatment, and to wave in my doctors face.

I need explanations, most of the time I don't, I probably won't by the time the results come in, but right now, just one little thing......would be nice.

Possibly that makes me abnormal ;)
 
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