Nhs endo and latest blood test results - Thyroid UK

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Nhs endo and latest blood test results

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Hidden

Please help, my results are worse then 3 months ago, I gave myself a trail of NDT and when I couldn’t tolerate it I tried T3 but couldn’t tolerate that either. I was too scared to tell my endo that today, but did say I found information on here, and it maybe I can’t convert the T4 or it could be the fillers in the levo that was causing me problems. I gave him a list of how I felt when on levo and he said sounds like I need a psychiatrist for depression as fillers don’t do anything and told me everyone can convert T4. The most aggorant Dr in the world he went on to tell me his job is to get thyroxine into me for my thyroid and he made it clear it was his way or no way. Having F/M and cfs I wasn’t my best mentally today and felt so intimidated that I cried. When I asked about my antibodies he said they will always be the same, nothing can change, and finally told me if I don’t take the meds I’ll get more and more tiered till I go in a coma. Which I know is true it was the way he said it that shocked me. He agreed re start on 6 mg once a week and re test in 8 weeks. Is this good? Someone please reply thank you.

19 Replies
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SeasideSusie
SeasideSusieAdministrator

You are very hypothyroid with those results.

What exactly were you taking thyroid-meds -wise when this test was done, and how long had you been on those meds?

He agreed re start on 6 mg once a week and re test in 8 weeks.

Are you saying he is going to start you on 6mcg T3 once a week? If he is prescribing T3 then it must be taken at the same dose every day. It has a half life of 24 hours, you can't take T3 once a week.

he said sounds like I need a psychiatrist for depression as fillers don’t do anything

Rubbish. Why do so many people react to Teva levothyroxine? Because it contains Mannitol rather than lactose. Why was there uproar in France and patients took to the streets about the "new forumula Levo" that was causing people to be ill? The inactive ingredients (fillers) had been changed and what were the new fillers - Mannitol and Citric Acid

sciencemag.org/news/2017/09...

The French government forced the health minister to make the old formula available pending investigation, and almost half of the 130,000 boxes sold out within two days.

and told me everyone can convert T4.

More rubbish. What about people with the DIO2 gene who have impaired ability to convert T4 to T3.

he made it clear it was his way or no way

So ditch this endo, ask to see a different one. Send for the list of thyroid friendly endos from ThyroidUK and ask for feedback on any you can travel to

tukadmin@thyroiduk.org

Hidden
Hidden in reply to SeasideSusie

Dear seasidesusie the meds I was on before this test was T3 which I stopped 2 weeks ago because I got ill on it. The endo is giving me T4 LEVO to start at 6mg a week. I don’t know if I should try T3 again or take the Levo he’s given me. I know I need to heal my gut problems which I’m trying but as I’m very hypo, time isn’t on my side is it to do this before I start taking medication. Am I at risk of a coma at the moment whith these latest results? I’m so ill today I just want to sleep. It’s a horrible feeling being so alone in all this. He made me feel so bad when he asked me if I had any questions then said ‘ or is that too much to ask’ I’m not sure what he meant so I sat and said nothing. Thank you for your help.

SeasideSusie
SeasideSusieAdministrator in reply to Hidden

The endo is giving me T4 LEVO to start at 6mg a week.

That's actually micrograms (a massive difference). So according to the note in the picture above you've been told to cut the tablet into quarters, so presumably a 25mcg tablet, and you'll take 6.25mcg once a week. It would seem that your endo is taking into account previous problems and is starting you off on the lowest possible dose. Have you had your prescription filled? What brand are the tablets (the box will show the brand). Be aware that many people have reacted badly to Teva brand. You may not, but it is the brand that is most likely to cause problems.

You've had so many changes, some very quickly, so it might be a good idea to go along with what the endo has said. It wont be an easy ride and it will take a long time to build up to a useful dose, but this may be the only way to do it with you because of past sensitivies.

I know I need to heal my gut problems which I’m trying but as I’m very hypo, time isn’t on my side is it to do this before I start taking medication.

So you'll have to do it in tandem and hopefully in time things will improve.

Am I at risk of a coma at the moment whith these latest results?

I honestly don't know. It can occur in patients with long-standing, undiagnosed hypothyroidism.

He made me feel so bad when he asked me if I had any questions then said ‘ or is that too much to ask’

Maybe he just thought that how you currently feel means that it would be difficult for you to answer that. Whether he's thinking because of a depressed state or because you're just so ill with your hypothyroidism I don't know.

Hidden
Hidden in reply to SeasideSusie

Thank you x

Hidden
Hidden in reply to SeasideSusie

They are WOCKHARDT is that brand Ok? I can ask for another brand from my GP if you tell me to.

SeasideSusie
SeasideSusieAdministrator in reply to Hidden

You will probably be fine on Wockhardt, I don't think I've seen anyone say they've had a problem with it. I was just cautioning that Teva seems to be the one that causes problems.

Hidden
Hidden in reply to SeasideSusie

My pain meds are Teva- I’ll have to check the fillers encase it’s same as the levo they do then.

SeasideSusie
SeasideSusieAdministrator in reply to Hidden

If you haven't had a problem with your pain meds, then I wouldn't worry about them, they obviously suit you. It's Teva Levo that's a problem because it's lactose free and they use Mannitol instead of lactose.

Hidden
Hidden in reply to SeasideSusie

That’s interesting as the T3 I have taken are Lactose free. It does not say what make they are.

SeasideSusie
SeasideSusieAdministrator in reply to Hidden

Were they on prescription and dispensed in a bottle? Or did you self source - if so the brand name should be on the box or the blister pack.

Hidden
Hidden in reply to SeasideSusie

A brown medican bottle saying Liothyroine 20 mg lactose free. On private prescription from a chemist in London no make or brand on bottle and no information leaflet. The tablets are round, White scored down the middle with 1B on. Or it may say TE it’s not easy to read.

SeasideSusie
SeasideSusieAdministrator in reply to Hidden

Pharmacist should always give a patient information leaflet when dispensing in bottles, along with batch number and expiry date of tablets.

I'm afraid I can't identify them, I don't know what any prescription T3 tablets look like.

Hidden
Hidden in reply to SeasideSusie

That’s ok, I also drew a blank when I did a google search. Sorry to ask so many questions today and thank you for all your help today really appreciated x

Sorry, but I'm baffled at what this endo is doing...

6.25mcg Levo per week? In other words, the equivalent of less than 1mcg Levo per day?

In which universe is this a sensible dose for anyone?

SeasideSusie
SeasideSusieAdministrator in reply to humanbean

I know, sounds crazy.

Hidden
Hidden in reply to humanbean

That is the dose he says to take, he’s wrote it at the bottom of my blood test results which I’ve posted for you. I should have explained sorry, the T3 was on a private script 3 months ago when I saw a private Dr which I can’t afford to go and see again. I can’t fight any more so I’m just going along with what this nhs endo has said today. I do want to get well I don’t need a psychiatrist like he said. I’m depressed because no one seems to listen to me. Thank you for you’re reply.

humanbean
humanbean in reply to Hidden

Your TSH is already nearly 27. With such a trivial dose of Levo your TSH is going to go a lot higher. This could be very dangerous. Please don't drive - you aren't safe to do so in your current state.

I hope you don't live alone.

Ask your GP to prescribe a more sensible dose of Levo, and make sure the paper prescription is given to you in person. Don't have it sent to a pharmacy by automatic means. Then you need to phone up various pharmacies and ask which makes of Levo they have available to fill your prescription.

If you want to make sure that you aren't given Teva then ask for a different make. Keep records of what makes you've tried and what symptoms you get. If anything swells up, take photos. If you get any rashes, take photos. Anything you can prove about what you say will help you to get taken seriously. When you go to the doctors always take a sympathetic male witness with you who knows what problems you are having.

Hidden
Hidden in reply to humanbean

Thank you for your kind reply I’m not driving at the moment, but I do live alone and have been my own carer for the last 20 years. I have no friends to accompany me to any appointments either. All I do is sleep and feel ill every day. I manage 2 days we’re im able to go to the shop for food. But on levo I couldn’t even do that, I just couldn’t function at all. I thought I was going to die. I now have no choice but to go on them again but at a low dose. I will listen to you and make sure I don’t get teva x

jarock
jarock in reply to Hidden

Based on those labs the medication dosage that you are getting is ridiculously low. Maybe you could try selenium , zinc and Vit C to

help with conversion , that is if you can tolerate them.

Hope you'll feel better.

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