It beggers belief it really does - UPDATE 20/10

[Jefner]

Just as background info, here is my previous post

healthunlocked.com/thyroidu...

Basically I was given a different T3 brand. I usually have Morningside and then out of the blue given Mercury Pharma which I don't think suits me. Have been feeling really ill for the last couple of weeks.

I have done all the donkey work that I feel my GP should have done (how I don't know because of the state I am in).

I spoke with my pharmacist a couple of weeks ago and asked why, all of a sudden, my Morningside had changed to Mercury Pharma because I was feeling ill on it. He said that was all he could get. I gave him indepth symptoms I was experiencing and told him NOT to give it me again. He checked his system and said he couldn't get me Morningside hence the Mercury BUT there was a possibililty he could get me Accord but no gurantees. He said it's all down to what their suppliers send them and even with if my GP did stipulate a certain brand, if he couldn't get it, he couldn't get it.

I have asked my GP on previous occasions to place on my records certain brands for certain meds but they rarely bother, they seem to think it's all in my head, so I get what I get

Went back to my GP told her all the problems and to reissue a new script for my T3 with no communication from them that it had been done. My script arrived last Saturday and they gave me Mercury Pharma again. Pharmacist had closed lunchtime so I couldn't phone and try to sort Typically things happen at the weekend so you can't sort them.

Emailed my GP Sunday night ready for her to see it Monday morning telling her my conversations with the pharmacist, how ill I feel and also that they had again given me Mercury Pharma. I went the whole hog and told her how alone I feel in dealing with everything. I haven't been monitored the way I feel I should have been. I haven't seen any specialist since 2016. It's like I don't exist and my GP never contacts me unless I email. Even then I rarely get a response.

I left it to her to hopefully source some for me only to find it was a training day and she wasn't there. I spent the whole afternoon phoning round every pharmacist in my area asking if they were able to obtain any. Boots said they could but my GP wasn't around for me to contact to redo another script and I just get fobbed off by the jobsworth receptionists. At that point I had no idea how long I would have to wait until I got my Morningside

In desperation I found some Morningside on a reputable online site so I had no choice in spending £300 to get it. It should have arrived today special delivery next day ie. today but never arrived so back on the phone I went, holding and holding until I spoke with customer service who could only pass a message on and informed me I should get it tomorrow but who knows.

As backup, back to phoning around all the pharmacists again this afternoon to see who had or could get some, most permanently engaged or left me hanging on for half an hour before they answered. Boots said yes so back to contacting my GP to order an urgent script to be sent over so they can order this afternoon and I can get it tomorrow. Tried to let Boots know it was coming over but line just rings out for half an hour

GP finally phoned me to confirm she had done it but had to redo the script as we were talking for 10mcg instead of 20mcg because that's all Boots said they could get. As usual GP couldn't get me off the line quick enough because of her apparent workload and she hadn'teven read my emails before phoning me, she just said "how can I help"!!!! So I had to go through the whole saga yet again explaining everything including requesting a referral letter for my new endo appt. And she wonders why I have taken my health into my own hands because I haven't been offered any help by them in years and I should be under an Endo and mental health scheme...but no.... here is a list, do it yourself! Then you phone only not able to get through or be sold their lists are full, you have to wait for months or you have to go elsewhere and there is no where else to try.

at the end of the day we are all just a number to them, over the years I have noticed a drastic change in that no-one seems to genuinely care anymore. They blame it on pressure of work etc but that doesn't stop someone from caring. I very rarely find the need to contact my GP, maybe once a year and alway send her through any test results to keep her informed. When I do need some help, I just get fobbed off to a point because I have a background of anxiety and depression, it's all in my head as far as they are concerned and I am making a mountain out of a mole hill. Then they give me a list of people to phone myself for mental health assistance. What happened to them doing it for me like they used to do. And people wonder WHY I feel so alone with this ongoing losing battle I go through every waking hour.

I cannot believe i have had to do so much just to get my T3 with no help, the calls I have made and the misleading info I have been given is beyond ridiculous. If I have no joy with my Endo then it's over for me, there is no where else. I am 60 and I have had enough

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UPDATE: Well the saga continues with the T3 I ordered online and it STILL never arrived today so I rang up in anger and cancelled my order for a refund. My GP submitted a script early evening yesterday to Boots. Several calls with them and several calls to my GP surgery. In a nutshell I finally got my Morningside T3 (7.30pm). I have 10mcg dose instead of my usual 20mcg (which for some reason is easier to find and I only take 10mcg anyway). Had to phone for a taxi to collect because of my severe anxiety and agoraphobia in not feeling safe to drive.

Now I have kind of switched chemists I might now be in the same position in not being able to get the T4 brands I have with Boots. I have to look into this before my next script. If Boots can't do all my thyroid meds then I will have to get my T3 from them and my Levo from my original chemist. Gonna be messy. I just hope to God I start feeling a little better soon, and I mean a "little" because my anxiety is usually bad most days. If I don't improve then it will show it probably wasn't the Mercury Pharma which means I have no idea what is causing all these "severe" symptoms and I will know I am completely done.

Roll on the 31st when I have my appointment with my new Endo. Please say a little prayer for me in that he can help me. I am petrified he can't.

I am also discussing with my GP in tweaking my hrt patches which I have been on since 2016, to which I never got up to "therapeutic levels" but because I was concentrating on starting my T3, I thought it best to only deal with one thing at a time so the hrt was put on the back burner, which it may have to again depending upon what my Endo says.

Just wanted to thank everyone so much for their support, it's such a lonely road for me living on my own with no friends to fall back on. All this stress has taken it's toll on my poor adrenals. Since my body crashed in 2016 I can't seem to handle the tiniest of stress anymore

[Regenallotment Ambassador]

hang on in there Jefner, you aren’t alone, we are all here for you 💚

It sounds like you are doing a really good job of advocating for yourself and it’s right to be the annoying squeaky wheel. It gets results!

I hear you though it’s really tough doing all this when feeling so low.

I filled in an online questionnaire for our local nhs healthy minds team a while back, had a triage call within a week with some very helpful advice to keep me going, and 12 weeks on the dot later I started a 12 week CBT course with a student therapist who happened to be a very experienced psychotherapist who was retraining. This was life changing. I am handling things so much better. I’ll always be me but I’m me with strategies to preserve my mental health and feel stronger for it.

Sending you virtual hugs 🦋💚🦋

[Jefner in reply to Regenallotment]

I was never offered cbt, was told my problems are too deep ie. having anxiety issues since childhood on and off but would like to try it

[Regenallotment Ambassador in reply to Jefner]

I’d definitely recommend it, mine all stems from childhood too (I think that is common) and a few traumatic experiences since. Is it offered by your local NHS? I’ve not heard of it not being suitable due to depth of issues, sorry to hear that. Good luck with finding support that suits you x

[Jazzw]

Oh Jefner… {{{Big hugs}}} Couldn’t read and run—what a shower of something that starts with the same 2 letters you’ve had to put up with!

It mostly hasn’t been my experience that doctors have ever cared—there were 2 doctors at my practice I used to try to get to see but they’ve both long gone and their replacements are hopeless. :’-(

Did you actually get it in the end? Blooming hope so…

[Jefner in reply to Jazzw]

i am hoping it arrives tomorrow but who knows

[Jazzw in reply to Jefner]

Oh I hope so! 🤞🤞🤞

[Hookie01]

you are not alone, there are many of us in this situation. I need lactose free, I gave up trying to get it so gave up T3. Currently back in the fight for it. Got it from the hospital so far, but who knows what will happen when I have to get it from a chemist. Good luck.

[arTistapple]

Jefner I have just written a long and ranting post which I have deleted. I am just so angry about your situation. About all our situations. I want you to hang on in there. Give yourself a chance with your meds and review when you have had some time taking them. When you feel better we can look at the issues again. Get well first!

[FAB-jellybean]

Hi Jefner , sorry you're having so many issues and in the GP's defense, they don't have enough time to treat every patient comprehensibly, the system is the fault. Doesn't make it any less frustrating though.

I had similar issues with T3, I was started on Morningside and got on great with it. I was then prescribed Teva because the pharmacist couldn't get Morningside one of the times. I was so poorly on it, just like you describe with Mercury. I completed a Yellow card report which meant that I could argue that I can't be prescribed Teva, but the GP wasn't 'permitted' to name the brand on the prescription so I still have to check every time that I've got Morningside and not Teva because the locum pharmacists don't read my notes. Boots have been really good though and do try their best to get me Morningside. A couple of times I've had to accept Mercury and I'm definitely not as well on that as the Morningside, but it is nothing like the reaction to Teva. I got my daughter to pick up my prescription once recently and she didn't check properly for me to open the bag a couple of days later to discover Teva. I phoned Boots and started to explain the problem and the girl stopped me mid explanation to say she knew who I was and what the issue was. Just to take them back in and they'd swap them for me. I was only able to that because I use Boots every time. Hopefully my experience will help you get things sorted. Stay strong 💜

[Jefner in reply to FAB-jellybean]

we are twins I had exactly the same problem with TEVA and even though it was on my records not to give me it, they have on occasion. Your GP CAN nominate a certain brand for your but the pharmacists can only give you what they can get at the end of the day

[Batty1]

You have been through a lot and people need to start complaining to the power who can change things for the better.