Just picked up so called 'medical notes'. I'm done.

[Jenny583]

I wouldn't know where to start with this. I can only say that I have NO chance of medical help- now or in the future. I think it best to move over to the PTSD site.

Waiting for MMH results today - for all the good that will do...

[PurpleNails Administrator]

Was this GP or hospital notes?

Are they incomplete or are there statements included you had no knowledge of or disagree with?

Why does it mean you won’t be treated?

[Jenny583 in reply to PurpleNails]

Where to begin? These were GP notes. But many years missing. .All blood tests missing, except for a handful from when I was 'euthyroid' while undergoing carbimazole here in Jersey, which started a year before while I was living In England.

The pile of documents consist of 2 or 3? parts.

1st part consists of all mixed up dates of printed words like : "thyroid disease monitoring"

NOS"? whatever that means?

I have not had a chance to go through it all yet, & quite frankly my head is reeling. But from the quick glance that I have taken - it seems that all - & I mean ALL the references to endocrinological tests & consultations are missing, as are many years of trade with the longest standing partnership with 3 female GP's until 2 years ago.

Also - the records only go back to 1981... Like I say, not had a chance to check yet, but 2 pages have a very bizarre (printed) repeated on 2 pages, & in my opinion (false) narrative - wait for it! here it is " page 1 & page 2. No dates or indication who wrote the following...

"Feels may no longer need pills as has discovered God's will for her Continue 1 a day in meantime, increase to 2 if nec. Says much happier I'm slightly concerned - says her feral cat is spiritual director. This not explored in detail Using occ propranolol only, migraines less freq now." End quote.

WTAF? I have no idea who wrote this, but suspect that it was not a GP that I was under?

Feral cat? I never could afford a pet, give me strength!

There are few hospital notes. PC dead.

[Buddy195 Administrator]

Hi Jenny583, could you please provide some more information so we can offer you support.

Reading your post from a couple of months ago, you were offered great advice from tattybogle to take the Levo script from your GP and try this for 6 weeks & then have a blood test.

Just wondering what thyroid medication you’ve been taking/ dosage and length of time you’ve taken it?

[Jenny583 in reply to Buddy195]

Sorry & thanks Buddy195, Pc is not notifying me of replies? I had a script for 1 X 28 day supply of 100mcg of Levothroxine,following the need for an exemption from Jury duty, which a GP in my current practice had no choice but to exempt me from, as I am bedridden. then I phoned for a repeat of the script. I then collected a 3 month supply of said same. Now into 6 week trial?

Prior to this I was obtaining T3 then Metavive, then t3 & Metavive, then NDT, the last 2 hormone supplies of which caused side effects?

I started on Liothyronine from autumn of 2017 - a years supply 5-10 mcg gifted by a friend. Autumn of 2018 I ran out, & found metavive. I started by pairing half dose of remaining T3, with starter dose of low strengh metavive (porcine). under range results were ignored in spite of having taken dose on morning of test (october 2018), but TSH was under range, so go figure...

After that in January of 2018 until last year I bought 2 max dose (bovine) metavive along with high strength biotin (which I now know skews blood assays). Then having been urged by a 2nd opinion GP to obtain a referral to an endocrinologist through- then usual GP -I was then trashed. Been going it my own till recently when I could not obtain a reliable source...

Now on 100 mcg Levo past 6 weeks. Awaiting results from UK private NHS labs. I picked up so - called - notes from current surgery today. I cant see how I can get support from GP's. Not in UK BTW. So.

[Sparklingsunshine]

Hi

Can you tell us some more, if you feel you can share?

[Jenny583]

Thank you Sparklingsunshine, but I am done in now. Just got results back from private blood test - without any notification. It will have to wait. Sorry. And thank you for your response!

[tattybogle]

"I had a script for 1 X 28 day supply of 100mcg of Levothroxine...... then I phoned for a repeat of the script. I then collected a 3 month supply of said same. Now into 6 week trial? "

so ... you were previously worried the GP would not accept you had a previous diagnosis of hypothyroidism and would not continue to provide any Levo, ...but the GP has continued your Levo prescription for another 3 months and i presume is currently in the process of giving you a 6 month trial of Levo ? ....(if it was a 6 week trial they wouldn't have prescribed 3 months worth.. and anyway a 6 week trial would be very unusual , 6 months is the norm for a 'trial of Levo' )

The '6 weeks' you refer to is presumably because they want to test your bloods after 6 weeks to see your response to the 100mcg dose they have prescribed.

So assuming you feel some improvement on the 100mcg (or at least an improvement over taking no thyroid hormone at all) and the blood results from their 6 week blood test don't freak them out ......they will then accept your need for Levo and continue prescribing .

So it's not at all clear why you are now saying this:

" I cant see how I can get support from GP's..... I can only say that I have NO chance of medical help- now or in the future."

They are prescribing a trial of Levo , and that is medical support.

[Jenny583 in reply to tattybogle]

Thanks for response tatty. I have not made myself clear. I was not given a trial, just 4 weeks supply of levo from a random GP, who had to justify his exemption letter to jury, because I would have been fined £1000 if I did not attend Jury service, so I asked for several bloods. Also It was the suppressed TSH that made him amenable to the idea of treatment with Levo, but then he went back on his word, & then I had to nag him into prescribing. Al blood tests reflected the side effects from the NDT.

I had to phone him & fight for the 28 day pack though, then I had to fight for the next lot, but I have not spoken with any GP since I phoned, & receptionist asked him for 2nd script - which I collected & paid for - 6 weeks ago. I have 6 weeks of levo left. But if I ask for a blood test then that would show similar results to the MMH one which I am about to post & which tells me I have hyperthyroidism. So they would probably lower or stop the Levo dose, & I could be living on eggs for ever! So far it's only cost me £105 in last 8 weeks, but if it were my own GP it would have been 3 times that. I have almost no income. + the Levo makes me ill.

Sorry for rambling.

[Mlinde in reply to Jenny583]

I thought Levothyroxine prescription is free because it's lifelong?

[helvella Administrator Thyroid UK in reply to Mlinde]

Pernicious Anaemia is also lifelong, but does not result in prescription charge exemption. The basis of justification is anything but properly thought through and understandable.

The exemption is only applicable in England. Jenny583 isn't in England.

[Mlinde in reply to helvella]

So Levo is the only one exempt (in England)?

[helvella Administrator Thyroid UK in reply to Mlinde]

There is a list of conditions which result in exemption. Myxoedema requiring thyroid hormone is just one of them.

Medical exemption certificates are credit-card-size cards. They are issued if you have:

cancer, including the effects of cancer or the effects of current or previous cancer treatment

a permanent fistula (for example, a laryngostomy, colostomy, ileostomy or some renal dialysis fistulas) requiring continuous surgical dressing or an appliance

a form of hypoadrenalism (for example, Addison's disease) for which specific substitution therapy is essential

diabetes insipidus or other forms of hypopituitarism

diabetes mellitus, except where treatment is by diet alone

hypoparathyroidism

myasthenia gravis

myxoedema (hypothyroidism requiring thyroid hormone replacement)

epilepsy requiring continuous anticonvulsive therapy

a continuing physical disability that means you cannot go out without the help of another person (temporary disabilities do not count, even if they last for several months)

nhs.uk/nhs-services/prescri...

Pernicious Anaemia is not on that list.

The other three nations of the UK do not have any prescription charges from which to be exempted!

[Jenny583 in reply to Mlinde]

We pay for everything in these crown dependencies, (it's not UK or NHS, even though we pay social security taxes to the "health service"). GP's are paid both directly by the patient & also through taxes. The Government pay £20 to GP. We pay the GP to write the prescription, we pay to phone & ask for a prescription, (known as a telephone consult), we pay for the 10 minutes of toxic humiliation in a face to face consult, that chat is (£50) & finally we pay for blood tests, & everything else, all itemised.

Averages out at £95 per 10 minutes, (not counting the telephone calls from GP) My phone doesn't seem to work very well, at least when it comes to incoming calls, must try & find instructions for it....

On the plus side....the waiting rooms are empty, & one can see any GP at any time, as puzzlingly I appear to be the only patient at that practice....

I had to pay a GP to write a letter to the Jury service as being bedridden & unable to attend. I have never had sick pay or any kind of benefits, so I can understand the confusion. The Jury clerk phoned me to check, also I have been getting silent calls since then.

I now have a phobia of Dr's, but I prefer the male GP that got me off Jury service as he hasn't sent me a bill for the phone chat when I asked for the Levothyroxine. The female I'm registered with is dangerous,+ overcharges me, it cost me hundreds of ££££ the 1st few weeks I saw her, with nothing to show for it.

🙂

[Jenny583]

Sorry tattybogle, I should have said: the GP I saw when i asked for an exemption from jury service which he signed me off from - agreed that I should try the levo that a kind soul gave me last year to try - as I had severe side effects from NDT - that I obtained last year. But I could not find the gifted Levo. So I phoned surgery, & got a script for Levo from sign off GP. I picked up a script for 3 months supply.

I obtained a very confused & redacted medical record today, which has totally redacted my signs, symptoms, & also records of both graves disease, years of hypothyroidism (untreated) & also treatment of above. Also the records only go back to 1981. The weird records appear at 1st glance to be a cover up of incompetance, malpractice & heresy. Years with the practice are totally ommited.

I have printouts that show that I was under range even when self dosing with both metavive & tiromel, but there is no mention of these results, or the consults with endo's. Nor is there any mention of anaemia, neuropathy, eye disease, thyroid storm, hypocalcemia leading to secondary hyperparathyroisism, endometriosis, osteoporosis, etc. If you get the picture?

I will put up the printouts on that I have from 2016 soon. These are not in the so called records. Tomorrow i will reveal the results of the MMH tests after 6 weeks on GP got Levothyroxine for anyone to comment. Please note I am in Jersey not UK, so your UK rights do not apply. PS I feel like I did before I started self sourcing TH, but worse.

[tattybogle in reply to Jenny583]

Can i kindly suggest you put your medical records away for a while. I don't think it's doing you any good. I think you need to concentrate on making the best of your current situation with the GP who has agreed to prescribe Levo.

Getting too involved in some very confusing past record keeping is not going to help you or the current GP know what your current medication needs are.

They will see blood results from what you are taking now .... and you can tell them what effect that dose has on your symptoms now ... and if difficulties arise you can post your results and what the GP says about them on here for advice from us lot .

So the in's and out's of your past medical history is not the point at the moment , and spending too much time thinking about it will probably not be very helpful to you or the GP.

some of what you find written in there will probably make you feel extremely angry, but now is probably not the right time to try dealing with that.

I know you are in jersey , but you are now getting some Levo prescribed which you thought would not be possible .. try and stay focussed on that , not the past.

[Jenny583]

I hear what you are saying tattybogle. It is not just the anger over 'notes'that is the problem, I cannot explain anymore than that, as it relates to crime & cover up, Iv'e been here before with "redactions", it never ends well...

I woke at 2.30 with pain in left arm & palpitations. It is now 4.35 am. My main concern right now is that I cannot function by day or night. I felt great the 1st 2 days on levo, as the incipients in the NDT left, & the T3/T4 lingered. Then a slide into unwellness followed over next 6 weeks. Now all I'm getting is side effects, & dysfunction...& I don't know why.

[serenfach]

I found my medical notes from both the hospital and the GP a complete work of fiction. At two points I appear to have changed sex (he says etc) and had an operation for piles. I have never thankfully ever had piles.

I have no children (I have three) and take no exercise, so am overweight - I farm so am constantly on the go, and am slim! I have vitiligo (I do) because I dont wash enough!

It just goes on and on!

The best thing I can say is that no one in the medical profession reads your notes, so I just treated the whole thing as a work of fiction and a huge joke.

I hope you feel better soon and sending a hug.

[Jenny583]

Eek! I think Dr's are cloned space aliens done up to look like Humans...

Apparently I found God, & have a feral cat as a spiritual director. Fact is - I'm still looking for God, but the only animal I know is the field mouse that checks to see if my cupboard door has fallen off yet. Perhaps mousy could clue me in?

I had 2 GP's 1 after another that were evangelicals. They were both convinced that I was depressed, as I acted like a comatose slug (Not animated enough).Then 2nd GP realised I had dementia & sent me off for "memory testing", clinic claimed that a spot the spot speed check thingy was an IQ test, & told GP that IQ was normal, & made no mention of the spacial memory test which I failed miserably. The whole thing was a box tick sham.

Then they told GP that I seemed depressed, & recommended max dose dosulupin, I was already on high dose from 1990, not to mention the propranolol. Then what little was left of my brain & thyroid packed up completely. So GP decided I needed to go on a course & be exorcised by visiting Anglicans!

Ended up with 7 more demons than I began with. Just ask Tiddles my spiritual director...

I hope your vitiligo washes off, bathroom taps & kids arrive & piles get better soon.😉

Hugs to you too. Take care.x

[Lovecake]

I wish I could come over and rescue you……But I’m sorry, I can only send a big hug……. Hang in there, keep in touch on here and hopefully your daft doctors will eventually get it right (if they listen to you, then they would). 🤗

[Jenny583 in reply to Lovecake]

Thank you for those kind thoughts. Bless you x