Completely Lost :(

[Kathryn-R]

Hi I am all very new to the support network but after yet again doing research for hypothyroidism I came across videos raving about finding the right support group. I was diagnosed almost 2 years ago, after discovering there was a "real" diagnosis for my symptoms it was such a huge relief. I changed my lifestyle completely and managed to lose just over 2 stone in weight. BUT this past 6 months it's been a constant battle and feel like I'm at the lowest I've ever felt. My husband is supportive but I just don't think he understands! Just feel like I can't motivate myself back into healthy eating exercise etc getting out of bed to see to our 2 boys feels like a chore in itself. My body just wants to stay in bed but my brain is telling me to get a grip and do something I just can't. Any help/advice would be greatly appreciated.

[shaws Administrator]

Kathyrn I am sorry you aren't feeling well but, do not worry, it is quite normal to feel the way you do at present when not on an optimum of hormones.

You need a new blood test for your thyroid hormones so make the earliest appointment, fast too but you can drink water. Leave about 24 hours from your last dose of levo before your test and take it afterwards. This allows your TSH to be higher than it would be if you'd eaten (food lowers TSH).

You have to read and learn unfortunately like the 40,000+ on the site who've not recovered fully on levothyroxine (although some have) because many doctors believe if the TSH is anywhere in 'range' they are on sufficient hormones when that is completely wrong. Most of us prefer and feel much better with a TSH around 1 or lower, some suppressed.

Always get a print-out of your blood tests for your own records and so you can post if you have a query. If you've not had B12, Vit D, iron, ferrin and folate checked as for these as we are usually deficient which can also cause symptoms.

Regards

[Kathryn-R in reply to shaws]

Thank you Shaws

Think your right I need bloods done again, I will get onto my doctor first thing. I was reading earlier about possible having another deficiency, I didn't realise you could be tested for this (as silly as it sounds) I was looking into vitamin/supplements to take for people with hypothyroidism when I come across this support group. Looks like I have alot of research to do, trial & error. Hoping this is a fresh starting point for me to get out this rut.

Since I'm new to this can you tell me what some abbreviations mean :

TSH

T3

I'm currently on 125 micrograms daily of lovothyroxine, so are you meaning by in 'range' as doctors say my thyroid level is back up/normal and nothing else is needed (in the doctors eyes) if that makes sense?

[Hidden in reply to Kathryn-R]

Welcome Kathryn,

TSH - thyroid stimulating hormone.

T3 -triiodothyronine thyroid hormone.

TSH is a pituitary hormone that stimulates the thyroid gland to produce thyroxine (T4), and then triiodothyronine (T3) which stimulates the metabolism of almost every tissue in the body.

Flower

The endocrine system

thyroiduk.org.uk/tuk/about_...

Hypothyroidism

thyroiduk.org.uk/tuk/about_...

[Kathryn-R in reply to Hidden]

Wow there is so much more I just don't know about hypothyroidism! I have alot to research, thank you

[shaws Administrator in reply to Kathryn-R]

As they say in the USA - 'its a whole new ball-game'

[Hidden in reply to Kathryn-R]

A good read is "Your Thyroid and How To Keep it Healthy" by Dr Barry Durrant Peatfield.

Post any questions. Members are hugely supportive.

Flo

[Kathryn-R in reply to Hidden]

I will give this a read tomorrow thank you very much, I'm sure to be on asking lots of questions

[shaws Administrator in reply to Kathryn-R]

This is from our Website which I think you will find very helpful

thyroiduk.org.uk/tuk/testin...

Unfortunately, we have had to educate ourselves in order to recover our health. Before the blood tests were invented along with levothyroxine in the late 50's/early 60's all medical students were trained in clinical symptoms of a dysfunctional thyroid gland. The first natural dessicated thyroid hormone was given to the very first patient in 1892 and she recovered. Previous to that they died. But in the 50's big pharma were missing out on profits so the blood tests were introduced along with levo but because many didn't now fall within the TSH range (which in the UK is that they will rarely treat until it is 10) they remained undiagnosed/untreated so 'other' diseases were named.

Other countries prescribe when TSH is above 3.

Unfortunately, because the medical profession have lost the expertise of 'clinical symptoms' (along with blood tests if they wish) the doctors just look at the blood tests and believe the patient is 'normal' health because normal is on the print-out and deny the patients more hormones and ignore the continuing symptoms or prescribe anything but an increase in hormones.

"I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions"

[Kathryn-R in reply to shaws]

I will get an appt with my doctor and see where I take things next for myself, I'm aware all people are different so this advice has opened my eyes and made me realise I need to research and find things that work for me

[Kathryn-R in reply to shaws]

So I have been to see my doctor this morning and he will run all bloods and I should get my results Friday afternoon or Monday at the latest. Can I post results here so I can get some advice, thanks

[shaws Administrator in reply to Kathryn-R]

Yes, do post and put the ranges too as it is the ranges are important as labs throughout the UK use different machines so different ranges.

[Kathryn-R in reply to shaws]

I will do and my surgery is usually quite quick for results so it should be Friday

[shaws Administrator in reply to Kathryn-R]

Your blood test should be at the earliest. TSH is higher then and lowers throughout the day which may make the difference between prescription or not.

[shaws Administrator]

P.S. forget exercise at present unless it's gentle walking. Of all the thyroid hormones T3 is the active one required in all of our receptor cells (the brain contains the most) and we cannot function if our T3 is low (a Free T3 can help to clarify if you're low but most labs wont do FT3 if TSH is in 'range)'.

If we exercise before we are on an optimum of medication it reduces the T3 which is required for our cells. We get depleted and feel unwell.

[fraserbooks]

I have been on Levothyroxine about the same length of time as you and have had almost the same experience. Initial success with weight loss of about a stone mainly from my middle and feeling more alert. I went down two sizes in trousers. However gradually I started putting the weight back on and found I was getting very tired and forgetful.

I went back to my doctor who increased my levothyroxine a couple of months ago. I find it has helped with the brain fog. I have followed advice on this forum and am taking a vitamin B12 and folate supplement and am now pacing my life more and am beginning to feel better and more in control. Good luck. I would definitely ask for a new thyroid function blood test.

[Kathryn-R in reply to fraserbooks]

I was at doctor today and got bloods so testing to see if I have any other deficiency. Will get results Friday, Dr was also telling me it's a constant battle and it's "maintaining" the changes I make that work for me. Which I know but it's so hard

[eeng]

Your doctor should also test you for thyroid antibodies. There are 2 types. If you have antibodies then you can expect to need an increasing dose as time goes by until you are on a 'full replacement dose', in other words your thyroid has stopped working completely. This could well be the cause of you feeling great for a while, then slowly deteriorating again.

[Kathryn-R in reply to eeng]

I got bloods done today whether or not he is testing antibodies I'm unsure, will get my results Friday and see what comes of them. Thank you

[Kathryn-R]

Had my bloods done today and should have results by Friday although my doctor said he didn't need to test T3

[Kathryn-R]

I think maybe because I've responded well to the levothroyine alone and wants to check for a deficiency so if when I get my results back and see what's what, give any changes a try for 3 months and if nothing helps he would do T3, that's the plan anyway! Do you think he should have just tested T3 regardless?