Over a year later and how far have I really got... - Thyroid UK

Thyroid UK

117,062 members135,830 posts

Over a year later and how far have I really got since I was told it isn't my Thyroid, although my TSH was rising monthly.

KerryHomer40
KerryHomer40

After having lots and lots of symptoms in line with an underactive thyroid for about a year 1/2 and after being dismissed by my GP, I went private. My TSH results were coming back in the upper 3s and the private consultant said nope no not Thyroid, maybe sleep apnea but test said no. So at a loss I started logging my own test through medicheck, which showed low T3 and increasing TSH.

After 6 months my TSH hit 5.13 I went back to the GP, which was 3 weeks ago. Gp was brilliant admitted it sounds like it is an underactive thyroid and was honest about her hands being tied as my TSH wasn't as high as they treat. Because my test were medicheck they can't use them officially but she would. While we waited for NHS TSH bloods and as long as I was over 4 she would medicate me, well guess what they came back 3.89. GP has still agreed to trial me for 3 months on Levo (25mg) and she will take the flack, I am on day 2 and I know it can take 7-10 days to kick in and some people on a thyroid facebook group said the dose is to low.

I am just happy that I have an honest GP who is willing to help however she can, so we will see. Has anyone else been in this situation and if so how did it pan out??

The things that upset me the most are the brain fog, clumsiness, tired, painful joints, talking like I am drunk as I forget words and how much I have changed over the last few years.

I used to be a very active person, yes overweight but active. Things I now struggle with:

I used to go to the gym/classes/bootcamp after I got in from work and walked the dogs

Now I struggle to get off the sofa at 7pm after feeding the dogs.

I would work long hours and would think nothing of going out till the early hours with friends, waking up and doing it all again.

Now I avoid going out more than once a month as I will pay a price for drinking and dancing the night away.

I would of been that person who organised social events, camping trips, get togethers and filling my spare time up with things to do.

Now I can be found sleeping on the sofa in my PJs with my dogs on my days off.

I used to ski & ride a motorbike.

Now I don't, well I got out on my motorbike for the 1st time in 2 yrs last weekend and it made my cry that I don't do these things anymore.

So I have to do something to try and get my life back!!!!

8 Replies

Do you always do your tests early in the morning and fasting? TSH is highest early morning, and drops throughout the day. It also drops after eating. So, timing is essential to get treatment/increases in dose. :)

Yes always early in the morning, fasting.

OK Even so, you are hypo with a TSH over 3, despite what the NHS says!

Hi KerryHomer40

25mcg is too low a dosage to start on, 25mcg is for elderly patients or for people with heart conditions, in fact 25mcg can make you feel worse not better.

You have an underactive thyroid and your GP is correct that officially they can't treat until your TSH is 10 or over, so your lucky your GP has agreed. When posting your results please include your ranges with your results. If you have not got them get a copy which your are entitled too and can no longer be charged for since 25th May 2018.

What time are you having your bloods taken for thyroid testing? they need to be the same time, and need to be in the morning as early as possible before 9am.

Why, well it's advice we give on here,that the GP's don't need to know, but, your TSH is always higher in the mornings and will give you a higher reading to obtain an increase in your dosage.

Don't eat and only drink water, and don't take your Levo before the blood test.

You should have TSH, T3 & T4 tested not just TSH, some GP's refuse to test T3 and T4, this is no good you need to see the bigger picture, you may have to do private bloods if your surgery will not do this for you.

You need your vitamin levels testing as well, Vitamin D, B12, Iron and Ferritin if they are low it could be adding to your issues and vitamin levels are important to support the thyroid. Have you had your antibodies tested for an auto immune disease?

I would try and not do as much exercise as you are burning yourself out, your body is struggling to do normal everyday task, without doing exercise.

Ideally you need to ask for 50 mcg of levo, then arrange a blood test in 6 weeks time and then increase levo by 25mcg every 6 weeks and repeat the process until your TSH comes down and you feel well.

GP's are obsessed with TSH only and NHS ranges, just because we are within the NHS ranges doesn't mean we feel well. For us to feel well it is advised on here that our TSH should be 1 or below and our T3 & T4 in the upper figure of the ranges.

I promise you, you will start to feel better, My TSH was 12.2 before I was put on Levo, I experienced highs and lows as I upped my dosages, but, I refused the 25mcg that my GP wanted me to go on and asked for 50mcg.

I am now on 100mcg with a blood test due shortly, I am getting better, but not 100% yet, but, everything you are suffering I had.

This thyroid business takes time to sort out and I know it's hard when you feel so bad, but, you have to ride it out and give it time.

Please don't leave it any longer than 6 weeks for another blood and an increase. Certain brands of levo may not suit you either, I didn't get on with TEVA, and many don't, I changed brands when my dosage was increased by going to different chemist and finding out what brands they had, before I gave them my prescription.

Please sort out your vitamin test though. Medichecks or blue horizons offer private blood testing if your GP will not do this.

Selenium 200mcg daily will also help support the thyroid.

Best Wishes

Peanut 31

Thank you for all the great information, its a lot to take in.

SlowDragon
SlowDragonAdministrator

Have you had vitamin D, folate, ferritin. And B12 tested?

If not ask GP to do so at next blood test. Or test via Medichecks

Or just vitamin D

vitamindtest.org.uk

Low vitamins are extremely common when hypothyroid

I note you are supplementing B12, zinc and vitamin D....but don't appear to have ever had these tested?

If, as you say, you read lots of posts on here you will know that it's not a good idea to supplement vitamin D without testing twice yearly. It's toxic in excess

Also when supplementing vitamin B12 it's a good idea to supplement a good quality vitamin B complex, one with folate in not folic acid

However do NOT start this now. Only ever make one change at a time. As you have started on Levo that's enough for now

25mcg often makes people feel worse. It's enough to turn your own thyroid function down, but too little replacement. NHS guidelines say 50mcg is starter dose unless over 50, frail or heart disease. But you will just have to stick it out, as GP is reluctant, and push for 25mcg dose increase after next test

beta.nhs.uk/medicines/levot...

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Thank you, I am on it for 3 months so will see how I go and then address the situation with more tests x

3 months is too long, by the end of 6 weeks my body was crying out for an increase, and the guidelines is 6 weeks.

Best wishes

Peanut31

You may also like...