Up the creek : I’m under a new Endocrinologist at... - Thyroid UK

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Up the creek

reikimaster
reikimaster

I’m under a new Endocrinologist at last who is usually on the ball but recently my appointment was cancelled on the morning of the appointment after he started me on T3.

The endo knew I was taking 10 Tiromel per day as I’ve been upfront about it . He’s put me on NHS T3 at a dose of 1 tablet per day .

I’ve followed his instruction I feel ill

My mood is low everything has took a nose dive

As my follow up appointment isn’t until 2 months away I rang the secretary to inform her I had my bloods done in Hope the endo would pick up the results last week I’m still waiting . I rang the hospital and three times then emailed . No response

I’m nearly out of the measly tablets

I’m seeking advise from other member as to ideas on what I can do next ?

32 Replies
oldestnewest

This is a difficult one. I don’t take T3 so cant advise on dose. 10 tablets sound like a lot a day, but I don’t know what the size of the tablets is or your symptoms. I’m not surprised your feeling unwell with such a dose a reduction - didn’t they give you any T4 to take with the T3? All I can say is, be careful about telling the endo you’re not doing well on your T3 trial. They might use it as an excuse to stick you on T4 only. Good luck. 🤸🏿‍♀️

Thanks for your advice.

The endo knows I’m a mad person on T4 . I was offered Levo but I don’t tolerate it .

He knows all about my self treating even under his care , I’ve been under him since September he only prescribed me nhs in December .

I want another prescription but not heard any more about it . I had my bloods done last week so I was hopeful of getting another prescription

Keep fighting. My dad used to say ‘the squeaky wheel gets the oil’. Ring and email every day - or every hour! Put a delivery and read receipt on your email if you’re using Outlook. And if you get no response. Contact PALs. 🤸🏿‍♀️

I don’t think I can get that read and receipt but thanks for the tip . The battle commence tomorrow

LAHs
LAHs
in reply to MissGrace

I think she means 10mcg, not 10 pills a day. I doubt if she would be around to write her post on 10 per day.

reikimaster
reikimaster
in reply to LAHs

Actually I did take 10 T3 tablets per day . And felt so much better for it

shaws
shawsAdministrator

He may have been taken to task for prescribing T3 to you especially if the cost of your prescription has been calculated on your 10 tablets per day (unless they were 5mcg).

I would have another try re his secretary saying that you need another prescription for T3 as you are running out and see what happens.

If he has prescribed 1 @ 25mcg of T3 day that's equal to around 100mcg of levo - which is a huge adjustment down if your dose was 10 x 25mcg of tiromel. If you felt o.k. on 10 x 25mcg you would have (I believe) 'thyroid hormone resistance' which means you'd only feel well on T3 alone but need higher doses than what would be 'normal'. Dr Lowe took 150mcg of T3 daily.

reikimaster
reikimaster
in reply to shaws

He’s prescribed one 20 mcg of Mercury pharma . The label on the bottle states 1/2 tablet twice a day

shaws
shawsAdministrator
in reply to reikimaster

So - in effect - he has given you a dose of T3 which is equal to around 60 to 65mcg of levothyroxine. What good would that do I don't know unless it was added to T4.

Dr Lowe always stated 'one daily dose' as the T3 is absorbed into our T3 receptor cells to saturate them, and the effect of that one dose lasts between one to three days but that would be a 'proper dose' not a minute amount that you've been prescribed.

I am well on my single dose of 1 and 1/2 T3 daily.

reikimaster
reikimaster
in reply to shaws

I’m hopeful that the dose will be increased because I’m struggling .

shaws
shawsAdministrator
in reply to reikimaster

It's awful when you cannot contact him to tell him how you're feeling. I know how awful (as do many on the forum) when we're swallowing tablets and hoping for an immense change but we then feel worse than before.

I have some form of resistance I had my Pituitary tested a few weeks ago when my T3 dose was 10 per day . My thyroid levels were flat . I was injected with something to stimulate the pituitary which didn’t do anything

shaws
shawsAdministrator
in reply to reikimaster

Dr Lowe said that those who had 'resistance' to thyroid hormones needed to take a dose that would 'knock others off their feet' but he was an expert in resistance. Other doctors don't know much but I am sorry you feel so awful.

reikimaster
reikimaster
in reply to shaws

I’ll get through it . My mood is low and the other nasty symptoms become less manageable my joints are so painful I had 3 falls last week hurting my hip ankle and wrist

shaws
shawsAdministrator
in reply to reikimaster

I'm really sorry that you've hurt yourself falling. I do wish they'd take our symptoms into consideration instead but they just don't understand how disabling it is to have undertreated hypo.

reikimaster
reikimaster
in reply to shaws

He rang me and increased my dose to 40mcg . Don’t feel nothing from it . He told me my bloods from

Last Oct on 10 x-25mcg T3 my T3 level was 1.4

Last weeks T3 level was 1.2

That was while I was taking 1 20mcg of Mercury pharma

Find that hard to believe really so I asked for a print out

I am assuming that you had a short synacthen test, which requires there to be an increase in the level of serum cortisol as a result of injecting synthetic ACTH (aka tetracosactrin). If that is the test, and it is true that nothing happened as a result ("which didn't do anything" as you say) then that should be being addressed. Or whatever test it was that you had, if there was an inadequate or nil response, then again, the Endo should be following it up. What did they say to you as a result of the test?

It wasn’t a synacthen test it was to stimulate the pituitary gland . The results came back completely flat so his idea was to reduce my own T3 - Tiromel from 10 tablets daily down to one NHS daily dose .

I was hesitant to do it but I did it

Have you got someone who can help you? You're likely to have trouble fighting your corner if you are unwell and inadequately dosed, so you need a good advocate. I wouldn't mess about. If you cannot get hold of the Endo's secretary in the next couple of days I would ring the PALS team and ask for their assistance to contact the Endo and get advice and a new prescription.

Could you ask for a copy of whatever you were injected with and the results, it might help you understand what is happening and what has been ruled out so far.

I have thought about taking it further but my husband is dubious . He says give him

A chance .

Yes I’ve given him ample opportunity to contact me. I’m sure he’d be frustrated if I wasn’t returning his calls . The test I had was to stimulate the pituitary as my TSH is always suppressed he’s looked back on all the tears of my thyroid bloods which Come back as suppressed always so he did a TVR test - maybe I should just check that bear with me

TRH test

Explain to your husband that you would not be making a complaint if you contacted the PALS team. They are the Patient Advice and Liason team and they help patients to find their way through the systems. You don't have to approach it as making a complaint, you can approach it from the angle of asking them to help you make contact with the person you need to speak to and see if they are able/willing to help you and they might be able to find out why he is not responding to your calls - Endo might be ill or on holiday for instance but there should be someone else standing in, it might be in another department for example and your calls might not be getting through.

There 2,on a busy department . Honestly it’s crazy . I understand he has a high workload but he could write me a prescription for more medication . I’m really struggling with my RA again today I could scream in agony with my hip ☹️x

Hi

I am in the same boat as you I had an appointment that was cancelled I informed my GP of this he contacted the endo to ask what she could do..as I had been on carbimazole and propylthiouracill I was very ill on both medications..the endos anewer was to put me bk on PTU with anti sickness tablets..well iv been on them 2 weeks and I'm back to being very ill but I just have to put up with it till I can get my t3 down..it's 28.4 so thatsorry what iv to do it sucks...😢😢😢😢😢😢

reikimaster
reikimaster
in reply to birkie

Oh that’s not on .

Those drugs are for Hyperthyroid right?

X

birkie
birkie
in reply to reikimaster

Hi

Yes they are i ment to say on the post I'm hyper take it your hypo..I seem to be getting no where as I said 2 weeks in and iv started to be sick eventho I'm on anti sickness drugs which I too am week before starting the PTU. .now I'm bk to being in bed as soon as I move I'm very dizzy then nausea sets in..😷😷😷 but as I said iv to put up with it my t3 is to high for any treatment by the endo...😢😢😢😢😢

reikimaster
reikimaster
in reply to birkie

Oh that’s terrible . Could you get to the hospital ! They’d need to treat you they can’t leave you like that xxxxx

birkie
birkie
in reply to reikimaster

I was rushed to hospital about 4 months ago I collapse in my local wh smiths..on arrival I told the staff I had an overactive thiyroid and was being treated with carbimazole..I was in a state sweating,wrenching total fatique shaking...my tremors are really bad😢 But no joy from the staff they egnored what I told them and went right in to doing a blood prick test...I told the nurse who was doing the test that I did not have diabetes as I knew that was the test they were doing..she then told me "your presenting all the symptoms" I then said yes because I have an overactive thiyroid..to add the test was negative..then I was left alone for over an hour or so one nurse popped her head round the door every now n then in total I was in hospital for over 4 hours..on release I was informed they could do nothing for me as the hospital had no endo on she was in Carslile so I would need to see my doctor the next day😤 To say I'm sick of this is an understatement...and I don't think these PTU tablets are working I'm becoming more I'll as I consume this poison..and I know what you mean about trying to speek to a consultant...I was diagnosed in Sep last year and I have never been able to speek to my consultant...it sucks..😢😢😢😢

Hiya,

Oh dear! I don't know why your endo isn't getting back to you but I have my suspicions. Please PM me and I'll try to get back to you tonight.

Take care xx.

You know you can pm 🙂

Hi we haven't chatted for a while! Sorry you are so badly treated. Really think you need to go through PALS. If nothing else you need to be put in the picture for peace of mind forca start. I also suspect money is the issue but PALS should get some feedback for you. Take care.

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