I'm Confused!

[thelady2003uk]

I've was diagnosed 5 years ago as borderline hypothyroid because my TSH varies between 4.1 and the highest it's been is 8.35. My endocrinologist is one who sticks rigidly to the new NHS Guidelines "You haven't even got a thyroid problem unless your TSH is over 10" I have blogged on this site before and told you all that I have numerous allergies andf have recently been diagnosed with an allergy to Corn Starch, a derivative of which is in most brands of levothyroxine. I have tried all sorts of levo including Eltroxin Oral solution which does not contain corn derivatives and I cannot tolerate this either. Rod told me last time I blogged that my body may not be converting T3, which I thought very interesting. I was given T3 once when I paid privately last year and I felt fantastic for a few days, but because it doesn't stay in your system long and my endo says it can lead to heart failure I have not been able to obtain anymore and yet I read on here that alot of you guys out there are on T3 alone - hence my confusion. I am not on any meds at all at the moment, I have been diagnosed with fibromyalgia and am in constant pain cause I can't tolerate pregabalin or gabapentin, I slept the whole of this weekend away and I feel like i'm going downhill fast. My T3, T4 and Thyroid antibodies are all normal and I just feel as we all do like I am banging my head against a wall. I am going to see my endo soon and I would like to go armed with as much info as possible, I have read that some people take nature throid, what is this and does it contain corn derivatives please? Any help that you can offer would be greatly appreciated. Many thanks in advance because I know you good people out there will be able to help me, the doctors certainly aren't!

[shaws Administrator]

Hi

If you can get a print-out of your latest thyroid gland blood tests complete with the ranges and post here, someone will comment.

It is a pity you have an Endo who is such a stickler to the 10 and ignores your clinical symptoms.

I have taken T3 alone as have many others and I was glad to be off levothyroxine and this is a link to Dr Lowe's archived website about T3 (Dr Lowe took T3 alone for many years).

web.archive.org/web/2010112...

Naturethroid is a dessicated thyroid hormone - these were the original types of thyroid medication before synthetic levothyroxine was introduced and replaced them. The British Thyroid Association has stated Armour (the original dessicated) are unreliable etc etc but it is not the truth. Naturethroid and Westhroid are hypoallergenic and you can find ingredients here

stopthethyroidmadness.com/a...

I am on Naturethroid and I have tried alternatives before but this suits me very well and have had no palpitations since begininning it (crossed fingers).

I went private and am glad I did. Before the TSH blood test patients were prescribed according to clinical symptoms.

This is one doctor's viewpoint of our treatment

worldthyroidregister.com/

worldthyroidregister.com/Go...

P.S. T3 does go into your blood stream quickly but its effect lasts from 1 to 3 days or even a bit longer.

web.archive.org/web/2010112...

[thelady2003uk in reply to shaws]

Thanks alot for the info, Just wanted to let you know that I went to see an endo privately in 2007 when I first started feeling ill, all he said was it's the menopause and told me to take HRT. I told him I had a total Oomphectomy in 1997 and that I had been assured by gyneacologists that I had gone through the change within 2 years of the operation, but he just insisted that I take the HRT - I tried it and it did absolutely nothing. Since then I have spent my life savings - over £7000 going to see specialists and having scans all to no avail. I wish I'd joined BUPA before I started getting ill, but unfortunately we can't see into the future and I didn't know I was going to get ill so I didn't and now I have to self fund because the monthly subscription is too high. I wouldn't mind spending all of this money, every penny would be woth it if I could just get a definitive answer of whats wrong with me. I have heard from so many endos that it's not my thyroid that's causing the problem that I have started to doubt myself. As you will see I have got inflamatory markers on my blood tests and wonder if I may have Vasculitis - I have all the symptoms of Sjogrens but again the GPs won't listen to me because it would cost the NHS money to do the special tests that I need to diagnose this and as I haven't got any money left now I am stuck in limbo and don't know where to turn. Sorry to rant on, but I know you will understand my frustration. Thanks alot. Take Care.

[shaws Administrator in reply to thelady2003uk]

Yes, we all understand your frustration and can lend an ear to people in distress.

Diana Holmes wrote her experiences of being ill and it is 'Tears Behind Closed Doors'. If Thyroiduk.org have it in their lending section you can borrow it for the cost of postage. You will see that you are not alone in being undiagnosed. Sjogrens is also a symptom of hypo. Unfortunately doctors or endos seem to be unaware of them and many only diagnose hypothyroidism when and if your TSH gets to 10.

I saw quite a few people before I was diagnosed (which took about 4 years) and none took a TSH test and told me I had this or that. Eventually a first aider suggested hypo and I got a blood test (one week after being discharged from the Cardiac Dep as 'probably viral'). My TSH was 100 and similar to you I went from pillar to post beforehand and no-one could diagnose by symptoms.

I had more problems on levo than I did before diagnosis but am fine now.

[RedApple Administrator]

I have read that some people take nature throid, what is this and does it contain corn derivatives please?

Nature-throid is a brand of desiccated thyroid. Other brands you will see mentioned here are Armour and Erfa. Desiccated thyroid is also often referred to as NDT (Natural desiccated thyroid). It contains both of the major thyroid hormones, T4 and T3.

These branded products are all manufactured in the US, and need to be imported into the UK. There are no desiccated thyroid medications produced in the UK.

For general info about what desiccated thyroid is, this wiki page may be of interest

en.wikipedia.org/wiki/Desic...

For the other ingredients in the different brands, see the page on the main Thyroid UK website. Click on the purple bar near the bottom of the page that says 'Non-UK - Desiccated Thyroid (aka NDT)

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

For info about the prescribing of, and obtaining desiccated thyroid, see here

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

and here

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

[smelly]

Ive had an underactive thyroid now for 14yrs . My heart goes out to you as i was fobbed off for years before one doctor actually took me serious. Like you i was borderline for years but had terrible symptoms. And was told "your tired all the time as you are a single mum with 3 jobs" But was going to bed at seven thirty along with my young daughters at night, I was so ill one day that my 8 yr old daughter had to cook the tea, bless her she emptied the contents of my freezer and cooked enough food for the whole street!

I had fibroids, migrains, every joint in my body hurt, i stopped having a social life as just getting through the day was exhausting.

But luckily im a holistic therapist. and by doing my own reserch joining thyroid uk and reading everything i cld get my hands on. And also having A level anatomy qualification i went in well armed. One dr turned round and said the best place for all my reserch was the shredder. I was horrified. So 5 drs later one finally listened to me and i went to see an endocrinologist. Hooray i thought, but oh no he was a rude and obnoxious. But by then id had enough, i turned round and told him "you might have studied this disease, but you don't suffer from it do you"? He then looked at me and said in a sarcastic voice get to the point my dear.

My dr had put me on 150mcg t4 but even after 18mnths i still felt rubbish. I had read that you may be lacking T3, so i asked him about it. To which he said well my dear T4 converts into T3 in your body, to which i answered only if you have enough circulating in your brain to start with. Ha i had him, as i then said an seeing as you havent done a T3 serum test your just guessing about my health....Ha you shld have seen his face, didnt like that one bit.

And low and behold i was right. i was lacking T3 and felt amazing as soon as i started on the right meds.

So all i can say my lovely is get as much info as you can about all your symptoms. And stand your ground. No one should have to lead half a life. I also now have fibromyalgia, and its horrible, im in pain every day, but i feel blessed that with my knowledge it gets me through.

Just stick to your guns ok good luck.

[thelady2003uk]

Thank you all for your very interesting help and advice, I have now got to fight my way through my fibro fog to take it all in before my visit to the endo. Shaws suggested that if I post my blood results on here somebody may be able to help with them so here goes: TSH 2007 - 5.71. 2010 - 2.45. 2011 - 8,35, JUNE 2012 6.1 SERUM FREE T4 - AUG 2010 - 13.0, NOV 2011 - 12.20. MAY 2012 - 14.60. JUNE 2012 - 12.90 SERUM FREE T3 AUG 2011 - 4.9. NOV 2011 - 4.3 BOTH T4 AND T3 results were listed as normal on the blood test results that I got. I also had my Thyroid peroxidase antibody level tested in JUNE 2012 this was listed as 10 - NORMAL. I also have raised eosinophils 0.52 Raised C Reactive Protein 12. Raised ESR up from 23 in July 2011 to 33 in May 2012. Doctors have taken blood again today to retest the CRP, ESR and also my Auto Immune antibodies to test for vasculitis and/or sjogrens syndrome. I apologise for the length of this message but I just need help please, I would rather be dead than have to live like this. It is only when I read items like Smelly wrote that makes me realise there are other people in the same position as me, but I know you will all agree when I say that I am absolutely fed up with struggling just to exist when I should be living!

[Jackie]

Hi I take armour and T3, on a script ,as I have a brilliant endo. Several things spring to mine. My heart is as bad as any one`s can be, barely works, arrests etc etc.it is true that cario`s do not like t3 but i have seen many over the years and the good ones say just have enough treatment to feel OK. and stay in range. If you see another endo , research thoroughly. On the subject of costs with any private consultant. The consultations are cheap but the tests , especially blood test are expensive. I never have any done at a private hospital. They will always write and request them from the GP if asked, my bloods I prefer to use Blue Horizon as, then I can always have FT3 done ( NHS here do not do it now)Incidentally , i have medical insurance ( always have ) but once any condition becomes chronic they will no longer pay for it. They mainly , really, only pay for surgery.I hope that gives you some ideas..

Jackie

[PoppyRose]

You're confused... so am I! I'm struggling too, sorry I can't help you but many will here. I really hope you get somewhere and please keep us all posted with any changes.

Best wishes.

[thelady2003uk in reply to PoppyRose]

Thanks a lot for your kind words Poppy Rose, it's lovely of you to take the time to write. I am still struggling but at least now I have got a decent specialist that does any blood tests I ask him for. I truly hope that you get somewhere too - we all know what it's like dealing with this horrible disease/disorder! Take Care of yourself.