Sick of living with hypo.

[fion]

2 years ago I was diagnosed with this disease and have never got better,tried erfa,levo t3 and nothing,I have tingling ,numbness,visual floaters,Weak muscles,sore knees and It's sad the only time I feel normal is on diazepam,which docs don't like to give,a weird variety of symptoms,I'm 42 and feel way older,sorry feel like a moaning git Now ,sorry x

[MacG]

Don't apologise, I really feel for you Fion. Sounds like you are at the end of your tether. I was diagnosed with hypo just 6 months ago (but think I have had it a long time) and understand what you say about feeling "way older".

I find that living with such a relentless string of symptoms undermines my confidence. Can empathise with what you say about the diazepam. Encountering this website was a bit of a revelation - it helps to know that other people are feeling the same.

Wish I could offer some concrete advice about your symptoms, but I am on a steep learning curve myself about what does/doesn't work. (This is actually my first post - and I just wanted to respond to you.)

[Hidden]

Hi Fion & MacG

there will be others along to offer advice with lots of ideas but have you had vit D, B12, Ferritin/folate tested by your GP ? they can effect how you feel physically. also adrenals

What they normally ask is that you get a copy of your blood tests with lab ranges from your GP and post them on here for advice.

just my thoughts and I can empathise with you.

I am just starting my new regime after finding out I have low B12 and red blood count also low vit D levels. There are lots that effect your condition if not optimal so hang in there until someone else comes along

x

[Marz]

Maybe try to obtain your blood test results with their ranges and someone will be able to advise you if you post them here. Could be that you have not been on an adequate dose. Having levels of B12 at the top of the range - and NOT just in range is important too. Sometimes LOW B12 can mimic hypo symptoms. Also I believe that anti-d's can suppress thyroid treatment although I do not have knowledge in that area. B12 does work at a vellular level along with VitD.

T4 needs to convert in to the active hormone T3 which is needed for good cellular activity...the brain, gut, heart, liver and so on. If there is not adequate FT3 in the blood then it will not be giving energy to all the cells. Bit like a car running on petrol only without any oil !

I would suggest looking at the main Thyroid UK website where there is so much good and helpful information which should enable you to progress and feel more positive.

Learning from this site will soon have you up and running ! Hope you soon feel better.....

[MacG]

Just popped back on to see if anyone else had responded to Fion and read responses by Jacaranda and Marz. Thank you.

Don't want to hijack Fion's original message with my own problems, so will post separately.

PS. Trying to sort out my profile picture. Was horrified to see it was blank. Makes me look like some sort of wired (oops ....typo - make that weird.......on reflection "wired" seems most appropriate) anonymous thyroid website stalker.

[elements]

what is erfa?

[helvella Administrator Thyroid UK in reply to elements]

Have a look here:

thyroiduk.org.uk/tuk/treatm...

Click on "Non-UK - Desiccated Thyroid (aka NDT)".

Rod

[Shaz123]

If you are severely low in Vitamin D you need a two week course of extra strong Vit D, I was recently prescribed 10'000 units a day for 2 weeks and then down to 4000 units a month to maintain levels prior to this I was prescribed only 400 units per day which I was told by the GP who finally put me on Levothyroxine and admitted all my symptoms were pointing towards hypothryroidism said the Vit D I was taking was only prescribed as a maintaining dose. Been on Levo for 5 weeks now and some improvement in my symptoms but I know there is a long way to go due to having ME/CFS also. All I will say is my skin cleared up really fast no more constant itching and skin eruptions are down to minimal now, hopefully my hair will grow back now. You need to fight for what you want now, the NHS does not seem very sympathetic towards people with our problems. I hope you get the treatment and find the correct meds to help you feel somewhere near better.