1 year on....no change!!

[SimonEssex]

Hi all, bit of a rant really...

I've had an under active thyroid for about 10 years now and apart from the occasional blip, things have steadily got worse. Started on 25 and ended up on 250.

About 14 months ago I had some polyps removed from my nostrils and went to Spain as part of my recuperation, since then I've had almost constant joint and muscle pains, weight loss and gain, constant tiredness and a numbing of the top part of my left leg. The GP has tested for everything including Vit D, liver and kidney function, full blood count and almost everything you can think of.

I currently take 200 of thyroxine and 70 of clopramine, Im fed up of feeling shite! Dont know where to go now but I know I cant carry on like this......I know Im not going to be cured but I just want the pain to stop...any ideas or suggestions welcomed ?

[Clarebear]

Yes a few ideas - it seems that about 85% of people do well on thyroxine but the other 15% don't. Often these patients benefit from the addition of T3, either synthetic or natural as in Natural Dessicated Thyroid such as Armour. More info here (scroll down to treatment options):

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

Or it may be that you just need an increase in your thyroxine. Do you have any test results that you can post on here (together with the ranges - these need to come from your own report as they vary by lab). If you do then someone will comment.

Other problems with vitamins and minerals are very common with hypothyroidism so it is important to have the following tested (these need to be high in range - not just in range to be optimal):

ferritin

iron

folate

vitamin D

vitamin B12

Deficiencies in these can exacerbate hypo symptoms and hinder the all important conversion of T4 to T3.

Hope this is of some help. xx

[PinkNinja in reply to Clarebear]

Jinx!

[Clarebear in reply to PinkNinja]

Great minds think alike

[PinkNinja]

My joint pain was in part due to the thyroxine itself and has improved since switching to NDT. Hair loss can also be a symptoms of taking thyroxine in some people.

I'm not saying that thyroxine doesn't suit you, just that perhaps your body isn't using it as well as it should. As you have had a full blood count and vitamin D tested, I wouldn't say it was anything there. Have you had your serum iron and ferritin tested? Be aware that "normal" does not necessarily equate to "optimal". Vitamin B12 and folate are also very important. B12 really needs to be above 500 rather than the 180 or so that the NHS state as normal.

You may also have a cortisol problem. Abnormal cortisol can cause problems with the body being able to use thyroxine so this may be worth looking into.

There is also the possibility that you have an autoimmune condition.

If none of the above are the problem, it may be that you are one of the few people that don't get better with thyroxine only and you may find that you need to add some T3 or NDT or replace your thyroxine with one of those.

You may find looking at the Thyroid UK website helpful. thyroiduk.org.uk/tuk/index....

I hope you find the solution

Carolyn x

[shaws]

This is a link to Dr Lowe's website of patients' questions which you may find helpful. It is a great loss to patients as he died earlier this year.

web.archive.org/web/2010122...

There are more topics at the top of the page.

[Triciatextiles]

Dear Simon

my husband has had similar problems to you - been ill for 12 years diagonsed with CFS/ME, in severe pain, on morphine patches as couldnt tolerate any oral pain killers.

After a fight with his GP he at last got referral to an endo of our choice (though the NHS choose and book system) who prescribed T3 only. Within one day of taking T3 only he improved, within one week he could walk down the road, he hadnt been able to do this for over a year. He obviously had a conversion problem - his body couldnt convert T4 (levo) to T3 although all his blood tests confirmed otherwise. If you live in or near Essex ask you GP to refer you to Dr Skelly at colchester general hospital, (my husband has seen him) he prescribes T3 only and seems a reasonable person to deal with.

You can get better but it seems your present medication just isnt working for you.

good luck

[SimonEssex in reply to Triciatextiles]

I've seen Dr Skelly at The Oaks.....he seemed more interested in the "worms" (varicose veins) on one of my testicles than anything else!!! and that cost £250....

[Triciatextiles in reply to SimonEssex]

oh dear sorry to hear this - did you ask him for a trial of T3? - this is what I did for my husband.

[JoanofArc]

Hi Simon,

Sorry to hear you're suffering.You do sound rather desperate and that is exactly how I felt whilst taking levothyroxine.The longer I took it the sicker I got.My joint and muscle pain became unbearable.It was passed off as being 'Fibromyalgia'. Well, what I can tell you is that these pains have diminished by 80% since being on T3 only.For me it is the difference between life and death.I must point out that I also follow a gluten free and low inflammatory diet.I take Vitamin D and Omega 3 fish oils.I do gentle pilates.None of this marathon running or intense cardiovascular stuff.It's too taxing on the adrenals.I used to take Hydrocortisone as I had very low levels of cortisol and I found that extremely helpful in relieving pain which in my case was caused by inflammation.I like to relax by taking epsom salt baths and whenever I can afford it I book in for either a hot stone or swedish massage.You can feel better.There are things you can do.But you might have to take matters into your own hands.Good luck!

P.s Your last comment did make me chuckle ALOT !

[SimonEssex]

Well I have got blood tests tomorrow morning and after seeing my GP on Friday, it looks like they are going to try me on T3

Dont know if this is going to work or not but feel like its another avenue tried. Is it wrong to be slightly excited?