New Consultant-Different Plan

[Lassithi]

Long story short- long battle to get diagnosis although received in 2019 and Hashimoto’s confirmed.

After several attempts to stabilise on mono therapy I was lucky enough after several years of strife and illness to be allocated an endo who listened to me, took cortisol levels (low) addisons test (negative), ultrasound (severe atrophy to thyroid-withered) and repeated bloods several times before agreeing to commence combination therapy Feb 22 and have been on 100 Levothyroxine and 20 liothyronine (10 am and 10 pm) and feeling greatly improved ever since that time. TSH has been suppressed almost since I commenced although endo was happy for GP to monitor and GP also happy. Told that he would monitor me annually moving forward after a further appt.

Sadly that Endo left and I was then allocated to a locum who at our first appt told me he wasn’t happy with bloods (TSH) and wanted to reduce T3 meds. I held my ground and he agreed to continue although at next appt he told me he doesn’t agree with previous consultants treatment plan and not happy that TSH being suppressed (no mention of T4 being low for me-usually 21-22).

At most recent appt said that he doesn’t believe that my symptoms are related to thyroid and offered to try me on HRT (this has tried and failed before and led to me being on a cancer pathway and eventual hysterectomy (fortunately not cancer although huge benign fibroids).

He knew at this appt that I had been referred by GP to another Endo team in a different area following a house move and said he was happy to discharge me if I would agree to reduce levothyroxine.

I received a letter to this effect before receiving a further e-Mail to say that he was happy to keep seeing me until I transferred and now wants to review me again next week.

l tried a reduction in Levo of 25 mcg as requested although after one week old symptoms surfaced and quickly came raging back and by week 2 I felt so ill that I needed adjustments to be able to continue to work.

Have increased dose back to 100 4 days ago and by day 2 was feeling much better.

Have tried to cancel the appt as dreading another confrontation but have been told I need to speak to his sec later this week. Family and my boss are unhappy and advising I make a complaint and I honestly don’t what to do for the best.

When he discharged me but agreed to continue to prescribe T3 and I then changed my GP as I had put it on hold for 10 months and needed to register with new GP so I don’t even have my old GP as an ally and feeling very stressed, (low cortisol really doesn’t help either).

Last bloods: TSH: 0.02, T3 4.8 and T4 18.7 in June 23.

Even though I continued to have some residual symptoms I managed them with exercise, diet and optimal vitamins and this has completely thrown me.

Any advise greatly appreciated.

TIA

[TiggerMe]

I think your best defence against this one is to say that you would like to be referred to an Endo to discuss any possible dose changes, a GP really shouldn't be interfering when you are on a combined regime. Have you got the Endo list from Thyroid UK so that you can give him a name?

Point out that you did try the reduction and felt awful, which I'm not surprised as your results are only mid range already and if anything you might benefit more from a slight increase! Are your last result done with our usual guidelines?

I really don't understand his attitude about 'willing to discharge you if you reduce your dose'?!! He should be working with you to become symptom free not bullying you 😠

[Lassithi in reply to TiggerMe]

Thank you so much for taking the time to reply-unfortunately it is the endo (not the GP) who is trying to reduce the dose. He took over when my original endo left the service and wants to change the whole plan that had been working for 2 years.

I have been referred into another service but the waiting list is long. I moved house and also GP and my old GP was brilliant. Unfortunately I seem to have got a really bad endo and seem stuck with him it seems until I move to the new service.He seems intent on keeping reducing until TSH raises unfortunately.

[TiggerMe in reply to Lassithi]

Ah! You could ask for a second opinion?

My Endo did the same with me, I too tried to placate her at the beginning by lowering my dose... ended up back in bed for a month... increased my dose and told her I won't be doing that again and I would like to be treated on my free T3 & 4 results as like you my TSH has been 0.05 since adding T3

She banged on a bit about heart and bone risks but I repeated that I am well within range and showing absolutely no signs of over replacement and I'm happy to shoulder that risk... then she backed down and I'm on the dose that works

When the GP gets twitchy and reduces my dose without discussion she will actually confirm that though my TSH is low and she would rather I reduce she accepts that I won't follow her advice and no adjustment is required!😅

[Lassithi in reply to TiggerMe]

Thank you, yes, I need to stand my ground. Will see if I can change my appt to telephone on Monday and have it out with him again.., will take my partner for back up.., thank you-that was just the support I needed 🙏

[Lassithi in reply to TiggerMe]

All bloods done as per advice here, gluten free diet and all vitamins C, B and D as per advice also and last test normal range with slight increase of D in winter.

[TiggerMe in reply to Lassithi]

So you absolutely don't want a reduction thank you and would rather discuss a trial increase as being mid range you would quite like to see if slightly higher would be beneficial... please 😏

He can't reduce your dose unless you agree... worst he could do is refuse to see you again 🙃

[Lassithi in reply to TiggerMe]

Oh I wish.., he tried that last time and I was delighted but then had a change of heart.., lucky me ☺️