Anticipated endo appointment 🤦‍♀️

[birkie]

Hi everyone ❤️

As some members will know I posted a few days ago that my gp will not do my repeat prescription for my T3 until I see an endocrinologist, for which she is doing the referral.

As I told her I've got around 7 possibly 8 days of T3 left.

Obviously I'm going to need to contact the surgery to obtain some T3 as I'm sure it will take more than 8 days to see an endocrinologist.

Firstly I'm very frightened as where I live I've come across these 2 endocrinologist trying to get the diagnosis of primary hyperparathyroidism, each dismissed my symptoms and blood results,.. I now have the diagnosis through an endocrinologist in Liverpool, who I'm under for this condition, she wants to solely deal with the parathyroid issue and feels I need to see another endo about my thyroid medication problems.

I'm OK with that, but it's the flipping endos up here that give me nightmares,☹️ I'm waiting for the appointment to come through, and already I'm having anxiety (which idiot will it be?).

Like many of us I've made my list of questions, got all relevant blood printouts, trying to correlate this info into something I hope the endo will understand.. (think I'm kidding myself there🤦‍♀️).

The main issue is both T4, T3 (lactose free) are giving me awful gut issues, no matter what I've been on, no matter what I do, I'm still having problems, this also leads to absorbtion, malabsobtion problems, which in turn leads to weird blood results, the endo in Liverpool did some thyroid bloods and noted..

1, I could be hypersensitive to the drugs

2, the T3 is pooling in my blood stream, not getting to where it's needed

3, there is definitely an absorbtion problem due to the amount of diarrhea I'm passing (showed her the photos of my 💩)

OK.... How do I approach this with the endo? I know I'm going to be seeing (one in the hospital just across the road from me) usless at best🤦‍♀️

The other is a town over... Usless at best.. Saw him for my graves disease, my T4 was 100 and his advice was just go back on anti thyroid drugs.. 🤦‍♀️ I was in hospital in thyroid storm 😠.

So as you see.. I don't have much faith in either of them.

If I can't stomach T4, T3... What would be the alternative???

[SlowDragon Administrator]

Request trial of Tirosint

Get list of current Levo and T3 available here

Print off list for endocrinologist

Check all ingredients

thyroiduk.org/contact-us/li...

Also email will include link to endocrinologist list

[birkie in reply to SlowDragon]

Thanks as always slowdragon ❤️

I'm going to sound thick here... What is Tirosint??

Guessing... Is it NDT???

I'm sure this appointment will be a battle, and quite possibly a wast of my time, as I'm sure they will just keep doing what they have been doing since 2019... Just chop and change the medication, hoping to get a different out come.

But I'm armed with the info off yourself slowdragon, and all mine👍

My god... Its like going to war.. 😂🥊

[SlowDragon Administrator in reply to birkie]

No it’s liquid levothyroxine

tirosint.com

Only 16 prescriptions for Tirosint in England in last year

openprescribing.net/analyse...

Armour NDT is lactose free

But very difficult to get NDT on NHS

1,800 prescriptions for Armour in last year

openprescribing.net/analyse...

could you consider seeing endocrinologist privately to get trial on Armour

[birkie in reply to SlowDragon]

🤦‍♀️ Been on the liquid levothyroxin slowdragon, I actually vomited it back, I gave it a good go, my bloods were awful on it.. it was far worse than the tablets 😔.As I say these endocrinologists have given me everything under the sun... Apart from NDT.

The liquid levothyroxin was in a white and orange box.. It said oral liquid levothyroxin on it.

I'm just about done with chopping and changing thyroid medication, it's not working for me, I need a sympathetic endocrinologist who can see how bad I am on this drug.

I'm speaking to the Liverpool endo tomorrow about my scan results (primary hyperparathyroidism).. But I'm going to tell her my fears about seeing the endocrinologist up here in Cumbria 😔

[SlowDragon Administrator in reply to birkie]

you had liquid levothyroxine……Not Tirosint which are gel tablets

More likely to get Armour anyway than Tirosint

[birkie in reply to SlowDragon]

Ha..... Gel tablets... Not had those slowdragon, I'll see what concoction they come up with this time🙄 I'll keep the site posted.. ❤️

[Batty1]

Do you have gastrointestinal problems?

[birkie in reply to Batty1]

Yes... Diagnosed with colitis in 2015, I have inflammation in the bowles everytime I try to stomach these T4, T3 tables.. I'm now on T3 only and I can't increase up without the inflammation, diarrhea, cramping getting worse, and what I can stomach in T3 does not move my thyroid hormone in to euthyroid, I've been trying for 4 years now 😔 gp, endo are just swq, changing thyroid medication hoping to get a different out come.. It's always the same, I have bad stomach /bowle issues 🤦‍♀️

[Batty1 in reply to birkie]

Your Doctors should have a better understanding about your colitis and absorption issues and intolerance to medication due to the condition …. Absolutely horrendous treatment and lack of compassion have you tried to see your gastroenterologist and get him to explain to the ignoramus’s about your condition and intolerance to meds with a possible solution? I know it’s a long shot but getting the Gastro doctor involved might ease the stress of constantly defending your gastro issues to GP just so you can get proper treatment for thyroid.

[birkie in reply to Batty1]

You know something Batty1 when I was rushed into hospital having rectal bleeding and vomiting blood, it took about 5/6 days for the gastro to do tests, he did camera down throat, camera back passage.. 2 scans and sent the findings for a second opinion to a gastro in Newcastle, both agreed I had colitis.On discharge from hospital some 5 days later (11days in total) he prescribed me a drug to prevent further problems, and discharge me back to gp with recommendation on the drug and my colitis and lactose intolorence.

I was brought into the surgery to see the gp, given the instructions on lactose, which I did a years food diary on (lactose free milk no dairy ect, when I went to pick the tablets up they were buscopan, I'm pretty sure the gastro didn't prescribe those tablets, I rang the surgery back up to speek to the gp, he just said they do the same job as the tablets the gastro pescribed🤔

Anyway I just got on with life, did the food diary kept off dairy and did quite OK, apart from the odd bouts of cramping, inflammation, diarrhea, then my thyroid went over active and I was put on anti thyroid drugs.... Well everything came bk, diarrhea, inflammation, cramps, I knew right away it was the anti thyroid tablets, but gp just told me to persist with them, he then changed them to ptu which had the same affect, rushed into hospital in thyroid storm, did bowle scan because I looked pregnant, again colitis flare up.

Full thyroidectomy in 2019, then put on thyroid drugs with same affect.

My gp as never referred me back to gastro, not even under one eventho I have asked several times, it's like banning my head against a brick wall 😔😔

[Batty1 in reply to birkie]

That’s awful and a gastro doctor might be a great advocate for the colitis and drug intolerance with Gp.

I have developed all kinds of weird issues since losing my thyroid it’s maddening.

[birkie in reply to Batty1]

It certainly is... All the good work I did in my food intolerance diary, keeping off anything that would flare it up, then I get the diagnosis of over active thyroid, and get put on drugs that re affects the colitis 🤦‍♀️... And the worst part is.. No gp or endocrinologists give a stuff. 😠😠😠