Levo prescription rejected - low TSH

[NWA6]

I’ve been on Levo for 10yrs. I’ve never had a good rapport with my GP, always arguing about my medication, always pushing for an increase because my symptoms persisted despite sometimes being with range. Finally I asked for a new named GP - although at our surgery we’ve always been able to see any available GP. I did this after I saw my referral letter which stated that I was making myself unwell by increasing my Levothyroxine at will based on symptoms. And my GP asking my pharmacist to ‘have a word’ about how best to take Levothyroxine, which he did very publicly and despite me making it clear that I knew very well how to take thyroxine he echoed what my GP has said.

Now I cannot see any other GP other than my named one (there are 12 GP’s) and her partner (each named GP works in tandem with another). Then my patient access was cancelled so that I could no longer make appointments or see my enhanced medical records (ie blood tests). After 3/4 phone calls I had to actually physically go to the surgery and get them to reinstate that function. All they said was that it was ‘a mistake’ and they’ve no idea how or why my enhanced patient access was removed.

I have since been to see an NHS endo in Feb who said my tests are fine, no action needed, see you in 3mths. So I then saw a private endo who immediately put me on T3 because I’m not a great converter. I finally feel well, amazingly well.

I then went back to my NHS endo and she said that she would never prescribe T3 because it does more harm than good. But she said as an endo (the private one) has said there is a need for T3 then this is enough for my Surgery to prescribe T3. My NHS endo wants to see me in 3mths time because she’s ‘intrigued’.

My latest blood tests show a suppressed TSH but within range FT4 and FT3. I requested my usual Levo last week and now I see on line that that has been rejected. These are my results after 7wks with added T3

TSH 0.03 (0.35-5)

FT4 16 (12-22)

FT3 4.8 (3.5 -6.5)

As you can see from my FT3 I’m at no risk of being over medicated. In fact I have decided to increase my T3 from 15mcg to 20mcg per day because I still had constipation and just went through a horrendous period. I have had absolutely no difficulty with T3 and very quickly moved from x3 per day to x2 per day to avoid the afternoon dose. Now I am on 10mcg morning with 150mcg Levo x2 and 125mcg x 5 and then 10mcg at bedtime.

I HATE feeling like they are trying to push me out. Legally where do I go from here? I’m imagining my first step is a letter of complaint? Do I get PALS involved? I wish there was a pinned post on the steps to take action when they are trying to take away our medication. Is that something that could be in the pipeline? Should I email the Thyriod team and ask them if they can do a step by step post for official complaints?

[Marz]

I would first of all ask why your Levo has been stopped ...

[NWA6 in reply to Marz]

Yes, I waiting on a return phonecall. Not from a GP because they have no appointments available today but they have a pharmacist visiting today. I’m just getting ahead of the game because it will be because of my out of range TSH. They will use that to lower my dose. Which will not be optimal for me.

[Marz in reply to NWA6]

... but not without discussing it with you surely ?

[NWA6 in reply to Marz]

Yes, without discussion, I have 5 days of Levo left and suspect that they will only issue a prescription for a much lower dose. The phonecall with the pharmacist today will be useless because they will refer back to the GP but I’m going along with their protocols for now but I can see this getting messy 😔

[Marz in reply to NWA6]

Have you downloaded the research paper posted by diogenes - about T4 & T3 ... ?

[NWA6 in reply to Marz]

Yes, just refreshed my memory of it this morning 🤗

[NWA6]

I finally got my usual prescription in the afternoon. A few phone calls and then I called into the surgery and spoke to the practise manager who said it was a ‘clerical’ error and she’s not exactly sure what has happened.

So *phew* no barneys today 😩😬

[MissGrace]

They seem to make a lot of ‘clerical errors’ at your surgery. Firstly they cancel your patient access then they reject your request for Levo. They seem to be falling on the wrong side of the line of competence!

I can well understand your paranoia since we know hypo patients have to fight for adequate medication and there is an illogical prejudice against T3 and low TSH displayed by the ignorant in the medical profession.

Let’s hope they stick to clerical errors - and don’t make any medical ones...

🤸🏿‍♀️🥛

[NWA6]

Yes you’re right I fo feel totally paranoid! ‘Fight or flight’ mode kicks in 😬 I still believe that they’re trying to make me feel uncomfortable and leave and I would if I thought that I’d get treated any better any where else. I’ve been a nuisance since 2008. I’ve cried and lost my temper and told them where to shove it. I haven’t behaved myself but I don’t feel guilty, I was tired and unwell and raising 4 children and no one was listening 😔

[Hidden]

Hi could you ask for it to be reinstated until you see your Endo again or for them to contact your Endo with your results. Or contact Endo Secretary directly yourself. Given you are under consultant care at this time. Suppressed TSH with in range T4 (and T3) should. It be an issue for your Endo.