is it time to ‘go it alone’ again. Advice needed please

[Read58]

Hi Folks, quick history of me.

Hashimoto diagnosis in 2018 ( tpo 180/TSH 26 ect). Started on levo.

Around 2020 after still constantly feeling rubbish with low T3. Self introduced very small amount of lio. Fantastic for 18 months.

bloods in September 2021 showed elevated t4 and t3. Just thought overmedicated, but unfortunately i had positive trabs and was diagnosed with Graves. Trabs stayed positive until December 2022, but very quickly responded to carbimazole and levels plummeted on the tiniest amount of carb. Been off carb for four months, with regular blood checks always showing low t4 and t3. Above is results from yesterday. I feel absolutely rubbish. Endo couldn’t give a flying whatever, as results in range. Would anyone be kind enough to give thoughts on me contemplating self medicating, thinking levo only to start and sodding the endo off. Bearing in mind if graves returns he might refuse to treat me. Any opinions welcome.

[radd]

Read58,

Oh, this is awful for you. How complicated, not only your conditions but your treatment options. 

As long as you are well equipped to remain mindful in symptoms and can test regularly I would self medicate some Levo. Members will DM you their source if you can't obtain a prescription.

You risk dominant blocking antibodies as well as Hashi attacks with no meds. Even functional thought would be to medicate to quieten any thyroid activity and raise/decrease meds inline with labs. Your thyroid hormones are inadequate to regain well being and if you are continually struggling, your auto immune issues risk worsening. 

If you makes notes on exactly what you are medicating, symptoms and test result,s I can’t see how he can refuse to treat you should a Graves attack start dominating again. 

I will say I have absolutely no experience of Graves so speak only from what I have read.  I hope you feel better soon.

[Read58 in reply to radd]

Hi Radd, thank you for replying. Yes i think i’m going to self treat with levo. I’ll have my routine monitoring bloods done by my endo in a few weeks, and face the consequences of his wrath from there. He is an absolute stickler on treating by tsh only! Doesn’t listen to a word you say about symptoms. Thanks again and best wishes

[radd in reply to Read58]

Read58,

Are you supplementing selenium? Have you tried natural anti inflammatories such as fish oils and turmeric? Are you g/f?

Your whole aim is to keep the immune system quietened (which Levo will help do). What about oestrogen levels? Oestrogen is a real driver of inflammatories conditions. Have you read Isabella Wentz books?

All food for thought to make your journey easier.

[Read58 in reply to radd]

hi Radd, i have taken omega 3, vit D/K2, magnesium, zinc, B complex for years and levels are all excellent. (Currently having a break from selenium for a few months) GFree and funny you should mention oestrogen, as three months ago i started HRT ( 8 years post meno). I was looking for any reprieve possible from feeling rubbish. The hrt had an immediate positive effect. Should have taken it years ago! My remaining symptoms, I know from past experience with hypo, are classic hypo . Pretty certain i need to take levo, but know he medicates strictly by TSH ( because hes a bleep bleep 🤣). Thank you for all your help and suggestions

[Charlie-Farley]

Hi Read58

If it were me I would consider trying to broach the subject of being in range from a different perspective - feel free to use my bio as an example, you can refer to me as this lady I was talking to the other day blaa blaa

'THERE is ROOM in the RANGE for a dose increase and I am still symptomatic'

I argued my way (almost literally on one occasion) to a therapeutic dose - All in the bio - if you click on my face it will take you to profile/bio 😊👍

Win - win, your blood work stays in range with the added benefit of you not feeling like 'you know what'. Pray where is the harm in that???

If they resist you could always ask cool and calmly 'are you treating me or the lab work' 😉

[Read58 in reply to Charlie-Farley]

Hi Charlie-Farley, thank you taking the time to reply and i’ll read your bio.

[arTistapple]

Is this a possibility if you are in dire straits and need treatment they can refuse? Has he said so? If so, what a dreadful sword they hold over us right enough. I was given too strong a dose of T3 by a private endo and an NHS endo (without seeing me at all) who made the same mistake with levo. When I developed symptoms with T3 the private endo told me I could no longer be treated. The levo overdose just disappeared into the woodwork of the NHS allowing me to re-balance on a lower dose. Still working on it. It’s all very black and white and if nothing else we understand the ‘shades’ of thyroid hormone treatment. I think if the worst was to happen you would be treated in A&E. The whole premise of the NHS is free at the point of need. Perhaps this is something we should be having complete clarity on. We see all sorts from all walks of life with addiction problems, sports injuries etc etc. They are all treated at point of need. All we are trying to do is feel and operate better in our lives. I keep thinking how insane it all is but have not got a clue how to change it. From what I see on the forum, people with Graves have the worst end of the stick. Heart of hearts maybe best this particular t.at does not treat you. Oh how I wish we had clever compassionate medics instead of these devotees to despotism. Truly best wishes.

[Read58 in reply to arTistapple]

hi Tistapple, thank you for replying. I’m assuming ( no proof), that if i self treat the hypo, which he doesn’t give a flying monkey about, while he’s monitoring me for hyper ( he never treated me when i was hypo) he would discharge me. Doesn’t matter now, because i made the decision myself this morning . Spoke to his secretary and requested he discharges me. All the best to you.

[Read58 in reply to arTistapple]

also, technically i’m not hypo as free T’s are ‘in range’. Even more reason for him not to treat.

[arTistapple]

Sorry but he sounds a proper t.at. Where is the overview? It’s as quick as they can get rid. Probably looks better on his stats than treating you properly. Yes the ‘technically’ in range get out clause.