Endo App Today

[Smily52]

I’ve had a very successful endo appointment today ( I think). Endo recommends T3 she will write to GP to advise if dosage once bloods have been analysed. She also organised for neck scan to ensure no nodules, I’ve never had this done despite a huge goitre before being diagnosed with Hashimotos. What I’m now wondering is whether the GP must prescribe and whether I will have trouble getting T3 from chemists in uk? Can anyone advise?

[Russellb73]

Wow sounds like a very productive and successful meeting well done you ! I don't think you will have problems once the consultant has advised then the GP will follow there requests !

[Ziburu in reply to Russellb73]

You’d think. Not so in my case though.

The CCG stepped in and said GP was not experienced in T3 so all prescribing AND prescriptions had to de done by endo.

No mention of price, although it was clear the decision was cost driven.

Twice I was left without meds because CCG refused to take responsibility.

I have endo next week and am wondering if they’ll now start to suggested combined therapy etc? Even though, he took me off T4 as I was not doing well on it.

[MissGrace]

Hi Smily52. That sounds fantastic. Was this an NHS endo? I think they should have it at chemists if you have an NHS prescription. Could you post a little more about how the endo reached the conclusion to prescribe T3; the conversation that lead to it and also the area you are in? Might help others on here who are struggling to get the same outcome on the NHS. I hope T3 helps you to feel much better. 🤸🏿‍♀️

[Ziburu in reply to MissGrace]

It’s not routinely stocked and I can’t even order from boots.

Mine has to be ordered from an independent pharmacist.

[Smily52 in reply to MissGrace]

Hello MissGrace, I’ve suffered with Hashimotos for 25 years, struggled on Levothyroxine only all that time. I’ve never been referred to an endocrinologist. I’ve put on over 3.5 stone in weight and have been unable to shift it for 18 months been on ww and walk 5 miles daily. I get up drive an hour to work have a very busy day drive home walk the 5 miles go to bed, not shifted an ounce in all of that time. Since joining this site I made a gp appointment and told them I wanted to be referred to an endocrinologist and explained the weight loss\fatigue issues. Attended appointment yesterday and gave my full family history both parents and their siblings suffered with heart attacks in their early 50’s, weight is a huge burden on the heart. I recently had a compressed disc in my neck and I have being diagnosed with arthritis, weight also affects this. The endocrinologist said she would trial me on a combination of t3/t4 to see how I get on. I told her I felt I was existing not living... she was amazing I live in Bedfordshire. I now need to wait to see what will happen when my GP receives the letter from the consultant. Fingers crossed I can actually get the medication that a professional is saying I need........will keep you posted.

[MissGrace in reply to Smily52]

I have everything crossed for a good outcome for you. Even my eyes! 🤸🏿‍♀️👀

[Chippysue]

That’s good news as many endocrinologists are afraid of t3.

It’s a postcode lottery, depending on which cog you are under. It’s the first hurdle when Endo says yes but the Endo doesn’t pay from their budget in most cases.

GP’s and Endocrinologists are stopping t3 prescriptions all over the country, there is a group called ITT - improve thyroid treatment who are working hard to resolve this issue. They are on Facebook.

Sue

[Raventhorpe]

Hi Smily52 sounds like you had a very positive appointment with your endo. I have been on T3/t4 combo for nearly a year that's been prescribed by my endo and feel so much better for it ,but at our last appointment she was making noises about my GP taking over prescribing it but would review it next time I see her. I has been in contact with the CCG in my area in the meantime and they have said that gp's are not allowed to prescribe t3 it has to be secondary care only so don't know what will happen when I next see my endo whether she will carry on prescribing for me or I will be in no- man's land where I need t3 but no one wants to prescribe it for me, I'm really dreading it! It's a post code lottery. As for getting the prescription filled I found that the independent pharmacy the best bet as my dose was 5 mcg 3x a day and alot of pharmacy couldn't get that as alot of brands don't come in that dose, my pharmacy orders it in special for me takes two days to get in stock.wishing you well.

[Smily52 in reply to Raventhorpe]

So the Endo will write to the gp she said they won’t like it, is that because they won’t want to prescribe it for me? Could I end up in a situation where the gp won’t prescribe what the consultant has recommended? And if the gp does prescribe will I pay for it as a private script? Sorry for all the questions!

[bantam12 in reply to Smily52]

Your GP may not prescribe it, mine refused.

[Smily52 in reply to bantam12]

Then what did you do? Did you go to ccg ?

[MissGrace in reply to Smily52]

If GPs can’t prescribe only secondary care (endos) can, can the endo write you a prescription rather than asking your GP to write it? I don’t know the answer to that, wondered if anyone did. 🤸🏿‍♀️

[bantam12 in reply to Smily52]

I didn't bother to do anything as i do very well on Levo.

[Lost_Girl]

Hi Smily52

I’m having a few teething problems getting my nhs prescription of 5mcg Liothyronine . Large chain pharmacies near me said they couldn’t get so approached a small independent. She has sourced but had to check if she could order it!!! Yes she can order but now the problem is quantity - she can only buy them in 100s and script states 112 (8 week trial). Pharmacy will not have 88 exorbitantly priced tablets sat on their shelf in the hope I get renewed prescriptions! I’ve now phoned the endo’s secretary to request a reissue based on quantities of 100, which I hope they will post to me as I am a 2 hour drive away!

It’s not plain sailing at all even with a prescription.

[Ziburu in reply to Lost_Girl]

No it’s not, exactly same probs as me.

But outrageous they’re pretending it’s not down to the cost, which it so clearly is.

It amazes me all the efforts they’ll go to not to fund this medicine.

Finally they plan to rediagnose us all as suffering from other illnesses, which can be treated with other, cheaper drugs.

The straight forward thing would’ve been to publicise the crooked pharma companies and their bosses. Highlighting how they are ripping of the public and NHS in the most calculated and dishonest fashion.

[jgelliss]

This is fantastic news . A Dr that cares and puts patients well-being first . It's priceless . Lets hope more Dr's start to practicing by putting patients well-being first and understand how to .

Best Wishes .

[thyr01d]

Hi Smily, I am on T3 prescribed by my endo and have no trouble with getting it.

I happen to know there was a meeting today with NHS accountants about prescribing it at which some very pro T3 consultants were speaking, so, all should be well for you.

[Smily52 in reply to thyr01d]

That’s good news thy01d, according to lots of posts it’s not a straightforward process. I’m keeping my fingers crossed. Was it quite seamless for you, consultant sends letter to gp, gp creates script, I then need to see if I can source it from a pharmacy? Is it a private prescription that’s given?

[thyr01d]

Hello again. It was seamless yes,, though I had to work very hard to get the referral. You are already beyond that. My GP is happy to prescribe when it is on a Consultant's say-so, I think because when the Practice Manager, or whoever looks after the Surgery finances objects, she can simply produce the Consultant's letter. It's a normal prescription, not private, and, the T3 is available both from the Surgery Pharmacy and from the local Pharmacy, even though the town is tiny. So, I think you will be fine. My own personal opinion is that GPs like to be appreciated and may perhaps grow defensive in the face of criticism and then not be helpful or supportive, so I gather information then remain pleasant while calmly standing my ground.

[Smily52]

Thank you, keep well 😊

[Gillybean1]

Hi Smiley52,

Keeping everything crossed for you with the GP. and hope it helps your health.

No joy for me after 10 months to and fro between Endo, GP and CCG, despite Endo recommending (i have DIO2 pos + Hashi's) adding T3 to NDT, GP wont budge, Endo said its cost and greed, GP says has no experience of T3 (not true, and would only need to follow Endo dosage)

My only chance 9 years into this disease is a private script,but thats pricey. That said keep us all posted how you get on, its so good to here a success story.

Every best wish, G

[Smily52]

Alas it was not meant to be, I’ve received a letter from consultant which says she wants me to remain on levothyroxine for now, maybe due to my blood test results which were:-

Free T4 - 20.1

Free T3 - 4.4

TSH low at 0.07ml

Anti TPO -33

Glucose 5.2

Renal and liver function normal

Anyone know why tbe TSH would be so low? Any comments welcomed.

Tbe Endo has requested my bloods redone in 3 months and sent to her by GP. She’s also requested thyroid scan.

[FancyPants54 in reply to Smily52]

Oh dear! Another one who goes by TSH alone. Were there any reference ranges with those tests?

[Smily52 in reply to FancyPants54]

Free T4 (normal range 11.0-22.0)

Free T3 normal range 3.1 to 6.8

Was all that was recorded in letter

[Kitten44 in reply to Smily52]

I'm gutted for you, that's so annoying. Should go by symptoms rather than TSH. Your FT3 is not even half way through the range!!

I've no idea why the TSH is so low. I'm the same, and too waiting for results from Endo, no doubt I'll have a similar fate to yours.

The more I hear about other people's experiences, the more I understand why so many self-medicate...

[FancyPants54]

That is very upsetting. Your FT3 is much too low and your FT4 nearly at the top. Your conversion is poor. Are you optimal on the vitamins and minerals recommended on this board.? I struggle with ferritin.

If you can't get anywhere, you may have to think about doing it yourself. I have gone down that route recently.

[Smily52 in reply to FancyPants54]

My gp has said my vitamin levels are fine but as I’ve never seen the results I’m not convinced. I recently purchased vit d, vit c, iron, magnesium and selenium and vit b various pots of pills lol which I am taking four hours after my thyroxine and take magnesium at night which has helped with sleep, other than that I don’t feel any different only been taking 3 weeks. Are the tablets I’ve losted what are recommended? I’ve sctually never been advised anything about what to take and what not to take. I’m only learning from being on the site.

[FancyPants54 in reply to Smily52]

You could ask your GP to test your vitamin D, Vitamin B12, a full iron panel. I may have forgotten one!. But those would help. Then you supplement those that are short, not just buy pots and hope for the best. The pots are probably not high enough doses. It's much better to take what you know you need in high enough doses. Vitamin C is always good though, but you need around 1000mg a day. Sometimes more.

[FancyPants54 in reply to FancyPants54]

The vitamins and minerals are what we need to help us convert the T4 to T3. You could also have a daily dose of selenium. Don't need to test for that one. The iron is important. Get tested and then come back here with the results with the reference ranges, which you are legally able to request from your surgery.

[Smily52 in reply to FancyPants54]

Ok I wil do that thank you, im just disappointed that you can’t get full diagnosis and resolution why on earth didn’t the Endo do all of the blood tests to get full picture so that I would know what to take to help myself 🙄

[FancyPants54 in reply to Smily52]

Because they don't know. No doctor or Endo will take any notice of vitamins and minerals except for the current NHS push for Vitamin D. They don't even understand autoimmune hypo, so don't expect anything out of them.