Update on my thyroid medication 🤦‍♀️

[birkie]

Hi everyone ❤️

I posted some weeks ago about my appointment with an endocrinologist on Dec 27th, who just stopped my T3 prescription and put me back on T4 levothyroxin to which in her own report she stated... This lady is intolorent to both T4 and T3, therefore I recommend she goes back on T4 levothyroxin 🤦‍♀️.

She didn't give me any other option, I asked about NDT and were shot down 😡

So I was without any thyroid medication for around 9 days as I'd ran out, and the first prescription was for oral liquid which I've tried twice and vomited it back (endocrinologist was awear of this)

I managed to convey this to the gp and she sent a prescription for T4 teva tablets 😤 this is by far the worst thyroid medication I've been on 3rd time now,.. 🤮.. No surprise after 4 days all side effects started again, I tried to push through but after I soiled myself I'd had enough and discontinued them, it's been 9 days today without any thyroid medication and to be honest I feel OK, all gastric symptoms have gone, headache, metalic taste, shakes (feels like I've stepped off a washing machine on spin dry, palpitations, sweating (this along with the shaking feels like heaven🙏) I'm more alert have more energy, my body pain as gone down, I have no idea why🤷‍♀️ I just feel great.

Now I know this will not last, as my last bloods showed TSH at 11.58..T3 4.7 (on T3 only then)

So I know my T3 will probably be on the floor now, goodness knows what my TSH will be, but I'd like to ask how do you know your going into bad hypothyroidism, I have never really felt hypo symptoms, or the ones that the NHS pop up on its site😬.

I've been to see the gp this morning after I sent a letter to the practice manager stating my disappointment in trying to obtain an appointment to discuss the fact I've had to discontinue my thyroid medication T4 and why.

The gp was pretty good she as listened to my fears about the endocrinologists in Newcastle where she as referred me and is looking for another endocrinologist appointment 🙌 as I told her she needs to put in her letter my particular needs, in that it's a gastric problem I'm having with the thyroid medication both T4, T3 and would there be anyone capable enough to look into my problem?

She knows I'm now no longer on any thyroid medication but doesn't seem bothered, she knows I have no thyroid also, she as not requested I have any thyroid bloods done either 🤷‍♀️ I'm a bit bothered about those to things😔

[1tuppence]

birkie, there have been stories from other folk on here saying how they initially felt better when they stopped their thyroid hormone replacement.

It would mightily concern me if my thyroid hormone replacement were to be stopped for any reason.

In your shoes I would ring the surgery and state/repeat that I have no thyroid replacement, haven't had any now for 9 days.

Being without both a thyroid and the necessary replacement hormones causes me great concern.

What do they suggest I should do?

and

How can they help this potentially dire situation from worsening to an emergency.

[Charlie-Farley]

Hi birkie

unless your lack of a thyroid HAS been discussed in the consultation do not presume that it being in your notes means they will know.

That said if the fact you have no thyroid was discussed and she is ok with you not being on any form of replacement- I would worry about her competency. There are plenty nice but clueless out there.

[birkie in reply to Charlie-Farley]

Yeah she knows I don't have a thyroid, and that I'm now not on any thyroid medication, and she knows why.I was surprised she didn't recommend any other medication 🤷‍♀️ or that she wanted my bloods done!!

To be honest I was trying to get her to send me to a compitent endocrinologist, hopefully one who as more understanding of my problem and not the diabetes specialist one.

Think I will need to go back to the surgery and speak to someone 🤦‍♀️

[SlowDragon Administrator]

make another appointment for Monday and insist that thyroid levels are tested…..

TSH, Ft4 and Ft3

If necessary at hospital they can give injection of T3

It’s vastly more expensive than NDT

Liothyronine 20microgram powder for solution for injection 5 vials - cost ………£1567.50

NDT is available on NHS

Extremely difficult to get prescribed but not absolutely impossible

openprescribing.net/analyse...

[birkie in reply to SlowDragon]

I was fixated on trying to get her to send me to a compitent endocrinologist and not the usual diabetic specialist ones, she'd referred me to Newcastle RVI but I've already seen 2 endocrinologists based there and both just wanted me off T3 🤷‍♀️ so what's the point.Yeah think I'll need to go back to the surgery on Monday and explain the situation 🤦‍♀️

[Hedgeree]

Hi birkie,

Ask them to prescribe you the 'Vencamil' brand of levo. It will be worth trying it. It maybe possible that it will cause you less side effects. Fingers crossed you may be able tolerate it?

[birkie in reply to Hedgeree]

Yeah I'm going to have to go back to the surgery, I think her stance was well if shes intolorent to T4, T3 what's the use in prescribing anything🤷‍♀️ I'm quite surprised tho as she seems OK with me taking nothing, even when I don't have a thyroid 🤦‍♀️ just shows you how clueless they are😔

[SlowDragon Administrator in reply to birkie]

Ask her …

“Would she leave a type one diabetic without insulin “

Obviously she has to say no…..

Yet

You have no thyroid and no replacement thyroid hormone that you can tolerate

[birkie in reply to SlowDragon]

Yeah she is awear of that, I did feel she was a bit lost as when I said again "I don't have a thyroid" she said "really".I also managed to pop in the fact that my FNA in Liverpool showed a mass of 14 x 7 x 21mm above the right thyroid bed in to the thyroglossal tract, and was identified as thyroid tissue .

She just said "ho so you had partial thyroidectomy"

"No I had full thyroidectomy due to graves thyrotoxicosis" 🤦‍♀️

And this mass was not there in 2022 on my US scan.

[SlowDragon Administrator in reply to birkie]

But might actually be producing thyroid hormone….?

They won’t know if they don’t test

[birkie in reply to SlowDragon]

After the surgeon in Liverpool noted it was thyroid tissue and not a parathyroid gland which is what she's looking for, she did say.. "although it's rare thyroid tissue can grow back, if some tissue is missed, and there are cases of graves patients having thyroid tissue grow back which turns out to be graves again.This in turn would be an auto immune response like in graves, but as you say slowdragon I need my thyroid bloods done, I've now been off it for 9 days be 12 on Monday so I think it would be a good test as I'm sure I've no thyroid hormone in my system now👍

[Batty1]

Have you gone to see a gastroenterologist yet? Until you get to root of your stomach issues I think your going to keep struggling with thyroid meds.

[birkie in reply to Batty1]

Hi Batty1

I have a PHONE appointment with the gastro on 9th March, I asked the gp yesterday what a phone appointment would achieve 🤷‍♀️ as I'd like him to see what I'm actually passing in the way of diarrhea (photos) she just told me to ask him for a face to face when I speak to him on the 9th March.

I did say surely this is just holding everything up, he could maby get me on a drug that could help my gastric issues, but I left the surgery no futher ahead in relation to the gastro appointment 🤦‍♀️

[Batty1 in reply to birkie]

Absolutely stupid to have a phone conversation when you’re a new patient with a problem you need to be seen … This is what covid shutdowns have done for people with issues. … I hope you fight to be seen by gastro and in a timely manner not 6 months to a year.