GP wants to reduce levo, because my tsh was 0.008.I've increased my levo to 125 daily and still taking t3 5mcg in 3 doses. GP thinks I'm still on 75mcg.....I've sorted myself out using this forum and private blood tests and feel much better for it.
My issue is, how do I explain this to my GP
and would he stop prescribing levo because of my being proactive?
Are you still seeing the private Endo and would they back you up for your current dose?
GPs often dont understand about a low TSH when taking T3 so sometimes the T3 prescriber can OK your test results.
Hi, no private endo referred me back to gp, then gp referred me to nhs endo, both haven't got a clue and want to decrease levo
Your frees are the same as mine (TSH 0.05) and I now have an agreement with my NHS Endo that we work with frees and not TSH 'at my own risk' as she says "We won't discuss TSH as we disagree" 😁
It's hard to know what to do as they are supposed to be able to have an intelligent conversation about this and you are the only one that knows what you are talking about 😟
Self source T4 whilst you train them up?
You have a few options.
- decrease Levo and become more unwell.
- find a different prescriber privately who understands how T3 reduces TSH and will pacify your GP.
-self medicate.
My Endo put me up to 350 levo and refused T3. My lovely GP (now long retired) said that that was ridiculous, and dropped me slowly to 150 levo and 20 Lio. Within weeks I began to feel better. After he retired they took the T3 away so I quietly moved to NDT. I told them and it is in my notes, but they dont read them. My TSH is now 0.002 and they want to reduce my levo, but I just tell them my TSH has been like that for years and that is just how I am. They leave me alone then.
From my thyroid journey been there and done that. Don't allow any Dr play with your thyroid dose. If you feel your Best with 150mcg T4 and 20mcg T3 hold on to this dose. You need what you need. Most Dr's are not well informed how to dose thyroid patients. Very few are "out of the Box"and respect how the patient feels.Trust yourself and be your own Best Advocate.
Best wishes.
Its all about them protecting their arses and professional reputations. They couldn't care less about patient wellbeing.
Meant to add this - thyroidpatients.ca/2019/03/...
May be worth printing and leaving at your surgery!
I'm in the same boat, my GP thinks I'm on 200mcg Levo and I was until December but since then I'm taking self sourced T3/ T4 combi. The " conversation" hasnt materialised yet but it will.
However due to not taking as much Levo as they prescribe I'm ensuring a nice surplus. So if they threaten to reduce my Levo I'll have a cushion.
As Jaydee says you can 'fess up to GP and see what they say, I really dont know about your rights regarding ongoing Levo prescriptions. You can accept a reduced Levo prescription and hope you dont suffer healthwise, find a private practitioner or ask for a referral to NHS Endo, preferably a T3 friendly one.
Or self source T3 and extra T4. Its a pain, an expense and obviously you are at the mercy of supply chains, but on the other hand having complete autonomy over your thyroid health can reduce a lot of potential stress.
I would write my GP a letter stating that dosing by TSH is no longer recommended and you are not over medicated as your T4 and T3 are in range, so you are refusing the reduction in dose as you feel well. My husband works for NHS and you are within your rights to refuse a change in your dose. It’s up to you if you want to bring up the self sourcing T3, I haven’t told my doctor as it could open a can of worms. You could also write to refuse further NHS testing telling them you do your own privately so don’t need theirs - that way you avoid this inconvenience in the future.
Hi, thanks for that,I was so angry, scared and frustrated, I couldn't think clearly, as going back to feeling rubbish isn't an option.Yes, when and hopefully very soon. (As I'm running out of levo) I hear from my endo or endo secretary who very hopefully will give gp request to increase my levo. Then I shall write. My gp stated. As you're under your endo, who wants to decrease your levo too. I shall not prescribe an increase until he is aware of the dosage increase....what a bloody mess. What gets me is, gp stated if my tsh is low, then my levo should decrease🤥
Having the same issue.GP diagnosed Graves because TSH low
Won't believe me I'm symptom free
Now expect me to see another private specialist or they'll stop my meds completely.
Angry
Fed up
Symptom free for 4 years and they've screwed everything up by reducing my 125 to 75mcg overnight
It's bonkers isn't it. I'm waiting to hear from my endo as gp said he won't do anything until endo advises him. Endo also on tsh route too.If no joy from my endo. Private it is, can't afford it but also can't afford to be off work, unable to care for my 2 brothers as well as run my own family....surely saved government probably tens of thousands of pounds being unpaid carer, up till now. Also no one has the right to control my health.
We know that we're on the right path and we also know we have to do what's right fir ourselves. I'm bloody furious
NHS basically refuse any other View except TSH
This is my issue
Told yesterday that my information is one of many wrong opinions on the internet even though info was from doctor.
Private appointment awaiting confirmation but trust me I will be seeking legal advice
I'm sure everyone on this forum have been through the mill, it's an issue which needs to be on tv, the nhs needs to brought to account for people's needless suffering.....for many years. My mother was one, thinking back she suffered in silence like many others. Good luck on your thyroid journey 🌸🌸
We should all get together and form an action group.
same for me, doctor wanted to reduce Levothyroxine from 125 to 100 due to TSH
I told the doctor I wasn’t bothered about the TSH as long a the T3 and T4 were is range especially as I haven’t got a thyroid anymore.
He accepted if and left me on the 125
GP wants to decrease Levo
Levo not working?
Reducing to 25mcg Levo only
