Blood Test

[dipsyqueen]

I stopped taking levo as felt it may be cause of feeling so down and since stopping feel better although still have lots of personal issues that obviously contribute to reasons for feeling down. Had palpitations, sweating, itching, no sleep. I went to the doctors my prescription had run out by then so did not repeat, she took blood test and said to book a routine appointment which is not till 10th March. Funny ha ha or not I was originally told that I would need to take this crap for the rest of my life so I was intrigued to see what would happen to me. I am not dead yet but sometimes think I am nearly 70 so maybe I should just bow out gracefully.

The results are Serum TSH level 13.75 mu/L (0.35 - 5.0)

Serum free T4 level 8.6 pool/L (7.0 - 20.0) whoever looked at result put slightly abnormal to be discussed at next routine appointment

What does anyone make of this?

[bantam12]

TSH of 13.75 means you are very hypothyroid and need to start your Levo again, you may feel ok now but over the coming weeks you will begin to feel the effects.

[MaisieGray]

Levothyroxine certainly isn't "crap", many people, by far the majority of those taking it, do very well on it. That many Drs in the UK deliberately keep us under-medicated on it to force up the TSH, and therefore not optimally well, is not the fault of the drug. That some people have a genetic or other problem obstructing its conversion to T3, is also not the fault of the drug. When we need to replace a shortfall in endogenous thyroid hormones, as indicated by your latest tests, it is important that we do so. That we seem okay or even better in the short term, without them (remembering that Levo has a long half-life and its effects continue well past the last day we take it) is not a reflection of what might be going on beneath the surface - low thyroid levels can cause irreversible damage to the brain, bones, heart, to name a few consequences. You presumably have a degree of residual thyroid function, but your above range TSH and very low in range FT4 is telling you all is not well

[SeasideSusie Remembering]

Maybe the brand of Levo didn't suit you.

How long have you been taking Levo?

Have you had your brand changed?

Many members have experienced severe side effects from Teva brand.

Some people have experienced side effects from other brands, but nowhere near as much as Teva brand.

Try a different brand of Levo.

[dipsyqueen in reply to SeasideSusie]

more than years I thought it was all the same the leaflet says manufacturer Custom Pharmaceuticals Ltd

[dipsyqueen in reply to SeasideSusie]

more than 5 years

[SeasideSusie Remembering in reply to dipsyqueen]

That's not a UK brand, so you're not in the UK then?

Have you always been on this brand?

Has it been reforumulated?

Have you Googled to see if there has been any other instances of people having a reaction?

Have you had thyroid antibodies tested - thinking if there is any autoimmune thyroid disease aka Hashimoto's here.

[RedApple Administrator in reply to SeasideSusie]

Custom Pharmaceuticals isn't the brand, but the actual manufacturer. I think they make Actavis.

[helvella Administrator in reply to RedApple]

I think they make Mercury Pharma!

[RedApple Administrator in reply to helvella]

Doh, yes of course!

[dipsyqueen in reply to SeasideSusie]

Yes born and bred in England still here in sunny South of England, the tablets Mercury Pharma are in London

[RedApple Administrator in reply to dipsyqueen]

The Mercury Pharama brand may be partly to blame for you not feeling good. They don't suit everyone.

The other very important thing is that you absolutely must take the tablets every day. It is not optional like headache pills.

What dose of levothyroxine were you on before you stopped taking them?

[dipsyqueen in reply to RedApple]

just 50 micrograms, I think maybe 25 would be better well can't do much till I speak to GP the lady next door but one couldn't get an appointment for her inflamed legs now she is gone do they care? doubt it

[RedApple Administrator in reply to dipsyqueen]

It's quite likely that 50mcg is not a high enough dose. I assume the blood for the test results above was taken when you had stopped taking the levothyroxine?

[dipsyqueen in reply to RedApple]

Yes blood test was 7 Feb last tablet was Sunday 3 Feb as I only had few left I took 1 every other day for a week. Not sure how long it takes to get out of the system, perhaps it will be easier to monitor once gone, the whole thyroid thing seems quite complex I did have anti Es in my blood when I had my youngest son but no one mentions that I was looking for the yellow laminated card to check. appreciate all support from everyone

[RedApple Administrator in reply to dipsyqueen]

Ok well, based on that I suspect you should be on 75mcg, maybe more. If your levothyroxine dose is too low, you won't feel good. If the brand is also not suiting you, then that adds to the problem.

As to whether doctors care, well GPs these days are far too time constrained and most have little to no understanding of thyroid issues. As you say, it is complex and most doctors are woefully ignorant about it. Add to that the fact that many of us are female and not quite so young, and it does rather make you feel you're being thrown on the scrap heap. Sorry to say, in the end it's down to you to stand up for yourself and get what you need. People here are really helpful and supportive, so this can be your sanctuary for as long as you need it to be, the place where you are understood and valued.

[greygoose]

Funny ha ha or not I was originally told that I would need to take this crap for the rest of my life so I was intrigued to see what would happen to me. I am not dead yet but sometimes think I am nearly 70 so maybe I should just bow out gracefully.

Except that it wouldn't be at all graceful. Things like incontinence are anything but graceful and sap your dignity. Going slowly mad with myxodema and being diagnosed with Alzheimer's is the antipathy of graceful. The final bow would be long, and slow and painful, affecting your heart and your kidneys and your liver - not to mention your brain. But, with luck, you might have a heart attack pretty quickly, and whilst that is hardly graceful, would at least be merciful. All in all, I think I'd rather take the 'crap' and/or investigate other possibilities for thyroid hormone replacement.

No, you're not dead yet. It doesn't happen over-night. It winds down slowly. But, the reason you were told that you had to take it for life is because your thyroid isn't going to get any better. It's never again going to be able to make enough thyroid hormone to keep you well - and you can't live without thyroid hormones. So, to stay alive, you have to take exogenous hormone - i.e. levo, T3, NDT.

I shall be 74 next month, and the last thing I want to do is bow out - gracefully or otherwise! I still have a lot I want to do. A lot I need to do for my family. I refuse to give in! I'll do whatever it takes to keep going. And, I don't think age is a reason for giving up. After all, 74 is not THAT old! lol Stick with it, and who knows, maybe the best is still to come.

[SlowDragon Administrator]

Please please make an appointment to see any GP ASAP. As an emergency if necessary

Your blood test shows you are very hypothyroid and in need of Levothyroxine

Many, many people on Levothyroxine find brands are not interchangeable. Always stick on the one that works best for you

Activis or Wockhart are often easiest tolerated

TSH should be under 2 on Levothyroxine

As greygoose says......being extremely hypothyroid is not a quick or easy way to go, more a living death

You will need vitamin D, folate, ferritin and B12 tested too

[dipsyqueen in reply to SlowDragon]

Thanks but I actually went in the surgery and because the DR said for me to make a routine appointment then that's what I got, the Dr has already seen results so I assume she knows the situation so I ask reception for a print out of results and why I put results on here

[SlowDragon Administrator in reply to dipsyqueen]

Then you need to make an emergency appointment, ideally with different GP

[SlowDragon Administrator in reply to dipsyqueen]

Or ring explain you have no Levothyroxine left and get a new prescription for Levothyroxine immediately

Bloods will need retesting 6-8 weeks after being on CONSTANT daily dose of Levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Come back with new post and let us know how you are getting on.