Please can anyone advise.....: I'm guilty of not... - Thyroid UK

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Please can anyone advise.....

chocoholic17 profile image
β€’13 Replies

I'm guilty of not being on the site for some time, as I have not been great really, so apologies for not being around. I'm concerned today because even though the endocrinologist I last saw wanted me on Naturthroid, today I had a medication review with some pharmacy practitioner or similar. He knew nothing about me and insisted I go back on Levothyroxine. I told him Levothyroxine only contains T4 to my knowledge and my endo wanted me on thyroid meds with T4 AND T3 and less fillers, as I have genetic issues that make me super sensitive to many medications. He said I do not need to worry about T3 πŸ™„πŸ™„πŸ™„ and would not budge but in the end we agreed that I would contact my endo for his view. I had sort of been expecting this, as my endo said he suspected in time the surgery would try and put me back on simply Levo. I fear he can only REQUEST a G.P. does something, not DEMAND it.

I've no faith in being able to remain on Naturthroid now and on top of that I picked up my latest blood test results and my GFR has dropped in six months from 70 to 57. I'm confused because it says normal..No action, yet underneath it says consistent with CKD3. Routine referral indicated if eGFR is declining. Nobody has ever mentioned me having any kidney disease before and having just looked up CKD3, that sounds worrying.

I am a well-controlled Type 1 Diabetic, with Hashimoto's Disease, Lyme Disease, genetic issues that cause problems with dealing with folic acid and thus need hydroxocobalamin injected too. I'm under a good nutritionist who has me in a super healthy diet. I don't drink or smoke and am slim.

Last time I saw the neurologist he told me in top of everything else I now also have Cervical Myelopathy. He is taking that very seriously and I'm undergoing tests to find out what's causing that....Brain MRI, Cervical Spine MRI and a Lumbar Puncture.

The thyroid nodules that I had biopsies three times, are no longer monitored as last one, they said it was benign.

I do have what was suspected peripheral and autonomic neuropathy, probably caused by the diabetes, Hashi's or Lyme Disease but now the neurologist is wondering if whatever is behind the Cervical Myelopathy is the cause of my neurological problems.

It's been three long years of feeling unwell (I was in bed for two months with glandular fever too) and I just want to get my life back. I'm losing strength in my arms and sometimes my legs are so weak I walk like a raggy doll.

I fear the NHS is going to pot and expensive medications will be denied patients, regardless of need or what trained consultants say. Has anyone else had their Naturthroid stopped by their surgery?Should I be worried about the kidney thing?

Sorry for the long post.

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chocoholic17
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13 Replies
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shaws profile image
shawsAdministrator

I suggest you make an appointment to see your local MP. He can also contact Lyn Mynott of Thyroiduk.org.uk whom I believe would be able tell him about what has been happening recently.

We've signed petitions about stopping T3 or NDT.

healthunlocked.com/thyroidu...

Thyroid hormone replacements shouldn't be withdrawn without the patients' permissions.

chocoholic17 profile image
chocoholic17β€’ in reply toshaws

Oh, right. It's not just me then. Thank you. I shall have to sign the petition too.

Right, petition signed now and shared with family and friends.

SeasideSusie profile image
SeasideSusieRemembering

Are you in the UK?

Was this at your GP surgery?

Or was this a Medicines Use Review at the pharmacy where you take your prescription?

If it was at the pharmacy, you would have probably seen the Pharmacist. They do these MUR's occasionally at my pharmacy. The Pharmacist is not responsible for prescribing your thyroid meds so it's nothing to do with him/her nor can they insist you go back on Levo.

chocoholic17 profile image
chocoholic17β€’ in reply toSeasideSusie

Yes, I am in the UK. The man I saw was at my G.P. surgery and is a Clinical Pharmacist Prescriber. I have never seen him before and I feel he had made his mind up before I even went in the room. I did write a lengthy letter to my G.P. before Christmas as they told me the NHS in this area would no longer fund me having Armour Thyroid, as it is unlicensed in this country but my letter reminded him I switched from Armour Thyroid 9 months ago to Naturethroid. It's sad they don't even know what meds I'm on in the first place!!!

SeasideSusie profile image
SeasideSusieRememberingβ€’ in reply tochocoholic17

Ah, I don't know how it works then as it will undoubtedly be something to do with a decision by your surgery. I thought that no NDT was licensed in the UK (happy to be corrected). Can you make an appointment to discuss with your GP? If you do have your NDT removed there is always the option of Thai non-prescription NDT and if your GP was happy for you to be on NatureThroid perhaps s/he will be happy to monitor you on self-sourced NDT.

chocoholic17 profile image
chocoholic17β€’ in reply toSeasideSusie

Sadly, my G.P. is not interested in any of my health issues. I think my health has just become too complicated for him and the others in the practice tend to be locums for now. I can't change surgeries either because the others in the town are so busy, they have closed their books. The only person I have faith in is my neurologist.

The endo I saw privately is miles away from here....its a several hours round trip to visit him...and sitting in a car for so long is not easy for me now, with my leg pain.

SeasideSusie profile image
SeasideSusieRememberingβ€’ in reply tochocoholic17

"Sadly, my G.P. is not interested in any of my health issues"

Yes, I know the feeling! It makes you wonder why they decided to become doctors in the first place.

A neighbour in her 80s rang our surgery on Friday. Was told it could wait until Monday. She was found dead Monday morning :(

jgelliss profile image
jgellissβ€’ in reply toSeasideSusie

SeasideSusie ,

This is beyond . How can such tragedy happen this day and age ? Is anybody accountable for this ? Something has to be done before more such tragedies happen .

Marz profile image
Marzβ€’ in reply toSeasideSusie

So sad SS ..... x

Baobabs profile image
Baobabsβ€’ in reply toSeasideSusie

This is a very unfortunate, sad story. One wonders if there is any liability issue as a result? My guess would probably be not.

chocoholic17 profile image
chocoholic17β€’ in reply toSeasideSusie

That's shocking!! What is it coming to?

ffranny profile image
ffrannyβ€’ in reply tochocoholic17

It is awful. lots of good experienced staff left when i was living down south in UK and a private provider took over the nhs contract

and they cant run trains properly either..

Hyposucks profile image
Hyposucks

Some GP's behaviour has become quite unacceptable. My 74 yr old husband saw a doctor yesterday as he has a persistent dry cough since a chest infection over Christmas for which he'd been given antibiotics. He also wanted to discuss his painful shoulder. On entering the room the Dr said, what can I do for you. My husband replied, two things really. The Dr said, I haven't got time for two, make it brief...... What!! (the Dr wasn't joking). I feel a letter of complaint coming on to the practice manager. Get it nipped in the bud. :(

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