Spaced out and anxious after the GPtook me off accord 100mcg and placed me right back after weeks my digestion is affected and I am tired

[Cuddlebun]

li feel anxious spaced out and my digestion is effected my GP took me off accord Levo for a month and then decided after bloods I needed to go back on them 100mcg I said are you not titrating me until I get back he said no need I have been so scared don’t know where to go now please help

[Jaydee1507 Administrator]

Welcome to the group.

It seems your GP has been hasty in taking you off Levo. Do you have a copy of the blood results that made them do that? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.

Usually if a GP thinks you are over replaced an adjustment of maximum 25mcgs is recommended, often even smaller adjustments can make all the difference.

If you don't agree with what a GP is suggesting then you should speak up.

After a month off Levo your body won't know if its coming or going. You could always take it slower and start on 50mcgs for a few weeks and increase if all is well.

Have you tested vitamin levels recently - ferritin, folate, B12 & D3?

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.

Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...

There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

If you have been without Levo then your vitamins have likely plummeted.

[Cuddlebun in reply to Jaydee1507]

thank you I plan to ask for the blood test prior to him saying I probably don’t need Thyroxin then when I went back with gut problems and feeling crap he just said I was TSH 3 and that was low ???? He admitted he has no expertise re thyroid as he is specialises in children xxx I asked him to prescribe me 50mcg so I can titrate myself so in my head I thought I will do a week or so at 50 and move up but started to worry that he seemed definite that I needed to go straight to 100mcg which I have done for a week but keep having stressy anxious and tearful spaced out episodes which scares me xx so I decided to try taking a 50 at night and see how the next day went which seemed ok til tea time and had another smaller. Episode xxx xx it all started when I had the virus 100 day cough in March which seem to effect my stomach and that’s why I went to the Gp after feeling better after just resting my thyroxine xxx I am all over the place and stressed xx all yesterday I waited till I took 50mcg last night and had a great day x confused 🥲

[Jaydee1507 Administrator in reply to Cuddlebun]

Taking Levo now isn;t going to make you instantly better. if you take a relatively high dose straight away it can throw the cat amongst the pidgeons as your body is so confused from not having any for a while. Try going back up more slowly.

Essential to test vitamin levels and supplement them to optimal so thyroid hormone can work well.

[Cuddlebun in reply to Jaydee1507]

cannot seem to copy blood results to you ! Today I had a locum who gave me a really full examination want a blood test nx week for thyroid and vitamins want me to titrate over the nx week 50/75/100mcg I got Floradix just to help me a little x hope I can slowly rise out of this

[Cuddlebun]

thanks so I will continue 50mcg very night for a while and get my blood results checked x would you be able to check them thru for me pls xxx.

[Jaydee1507 Administrator in reply to Cuddlebun]

If you want a member to get a notification of your reply you need to use the reply button dirctly below their response to you.

I saw this through the message feed.

Of course if you post your results, do start a new post and members will comment.

Essential to also check vitamin levels.

[Cuddlebun in reply to Jaydee1507]

ok thank you very much xxx

[Cuddlebun in reply to Cuddlebun]

Had a bad night woke up twice in panic really scared

[gabkad]

Don't let them do this to you ever again. They just can't take away the thyroxine without your consent. Just say 'no'. Now it will take several weeks to get back to where you were before so don't panic.

[Kazania in reply to gabkad]

Hello gabkad, (As I explained to cuddelbun see above) just to let you know that it took me a lot longer than a few weeks to recover. After 6 weeks off (100mcg) it has taken me from last June until now to get back to where I was. (my TSH went up to 65) I was really stupid to agree to doing this. The Endo took one look at me at second appointment and knew exactly what he’d done (ignored my medical history confirmed Hypo and PA) Endo already well-known on this forum for his attitude.) cheers😀

[Cuddlebun in reply to gabkad]

You give me hope lovely thank you

[radd]

Cuddlebun,

What has happened to you is simply awful and the repercussions may take some time to reverse. Your anxiety and panicky feelings are the stress hormones kicking in to replace the sudden unavailability of thyroid hormone, but should reside as your body becomes topped up with Levo again.

Except for a very few certain circumstances thyroid hormone replacements meds are for life and your GP should know this. Wishing you best recovery soon 🤗

[Cuddlebun in reply to radd]

thank you so much

[Kazania]

Hello Cuddlebun, I’m sorry you have had that experience and can totally sympathise. An Endo suggested I do 6 weeks off (was on 100mcg) Stupidly I agreed. I was totally wiped out; my next blood test had my TSH at 65 ! He told me to go straight back on my original dose, I tried but didn’t feel right I asked the pharmacist for advice and he said that’s too much at once, try splitting the dose am/pm. I took this advice; however it has taken me the better part of a year to begin to feel more like I did last June. Why they suggest these stupid/dangerous experiments I can’t begin to imagine. Total ignorance or in the case of my Endo as is well known on this forum total arrogance (he didn’t bother to read my GP’s attached medical notes, and obviously didn’t believe I had Hypo or PA. Both of which are clearly documented). I can only tell you that if you persevere you will begin to feel better but it does take time. 🥰

[Cuddlebun in reply to Kazania]

thank you sooo much

[Cuddlebun in reply to Kazania]

the locum I saw this am told me to do 50 for a few days the 75 for two three day then slowly creep up to 100mcg she gave me a thorough assessment heart x stomach blood pressure and blood sats and want another blood test and vitamin blood assess next week my GP own GP is new to me as I don’t do doctors as I was community nurse for 40 odd years till I retired 6 years ago 🙋‍♀️ I try not to take too many tabs 🙏🏻

[Kazania in reply to Cuddlebun]

Well that sounds hopeful, this doctor seems to have a better idea of what she’s doing. It’s so difficult to get a doctor at all these days, never mind one who has any competence on thyroid problems. Doing vitamin tests too, excellent. I hope she stays for a while. Take care and I hope you get back to normal more quickly than I did. Good luck😃👍🌺

[Cuddlebun in reply to Kazania]

🙏🏻

[Kazania]

take care and good wishes🥰