unstable after 2 years treatment

[SleepyDumpling]

Hi all.

I presented to my GP nearly 3 years ago with hypo symptoms and like many sufferers my tsh t3 and t4 were just within normal range. I had confirmed raised TPO anti-bodies but the consultant wanted to wait bfore strting any drug therapy. Not sure what for but there you go! After about 6 months of waiting I suddenly became hyper and was rushed to hospital with chest pain and fast heart rate. My t4 was 50! I was given a diagnosis of Graves disease and commenced block and replace therapy. For 18 months I took the drugs but my t4 and t3 never stabilised. The therapy was stopped in June wereupon my results plummeted. The consultant said that in fact I had Hashimotos Disease and it is common for there to be a hyper episode when this disease first presents! I am now taking Eltroxin. I have a strong family history of this disease. I feel quite angry that I spent 18 months in a living hell on the wrong therapy.

What I am wondering is why I'm still not feeling any better. I understand that it can take a long time to be completely well but surely I should feel some relief by now? Any thoughts??

[shaws Administrator]

After the usual run-around to be properly diagnosed, I was told take T4 and you will be back to normal health in six months. Three months later the first of symptoms of hypo I never had before appeared and new symptoms kept appearing.. Nearly three years later, with T3 now added, I already feel a great improvement..

If it had not been for support and information provided by Thyroid UK , Dr John Lowe and Dr. Peatfield (I feel sorry for people who have no access to the web) I would not have had access to information to enable me to get well..

[Luvvy64]

Hi,

lots of people dont do that great on thyroxine alone (Eltroxin) and need the addition of either synthetic T3 or many people,myself included,need dessicated thyroid products like Erfa,Naturethroid etc (I don't recommend Armour as i had real problems with absorption when they added microcrystalline cellulose as a filler!).

The Natural dessicated products have all the thryoid hormones T1,T2,T3,T4 & calcitonin and many people find relief from the remaining symptoms.

You could also be suffering from low adrenals as when you have had an underfunctioning thyroid gland for a long time ,the adrenals become stressed from trying to compensate and they can make you still feel ill.

You can get loads of info from Dr Rind.com and there is an Addisons disease website also which is great (cant find the link to it but google it).

You can also get loads of great info on Stop the thyroid madness site.

Hope this helps

Luvvy

[SleepyDumpling]

Hi Luvvy

thanks for info. I have been thinking about natural dessicated replacement. Not sure how to get hold of Naturethroid. Are you able to advise? Found out today that my T4 is 29! I seem to be so sensitive to the dose changes. I've gone from 11 to 29 in four weeks! I'm going to try and stabilise on Eltroxin only because it's easier to get hold of but increasingly I think I will need to go down the nutural route. Incidently my mum has Hashimotos adsn after 6 months of getting her dosage right she hasn't looked back. She's been taking Levothyroxine for 20 years and is as fit as a fiddle!!

[Luvvy64]

Hi,

you could try asking your Gp for a trial of NDT's but you'll probably find they will not be open to this at all ...to put it mildly!

I know some people get them from <an online source> as i think i'm correct in saying that you don't need a prescription for them in the US.

Its hard because i wouldn't advise anyone to start treating themselves without medical supervision but on the other hand for many people this is the only option.I may have to go down that route when Dr Skinner retires at some point as according to the NHS i dont have a thyroid problem (LOOOONG story).

You can google <an online source> in San Francisco and it will tell you if you need a prescription or not to try Naturethroid.

Take care

Luvvy

[David]

Hi Sleepy, I went on to Eltroxine in January of this year, it has taken till now to get myself back to something like normal, previous to that I was on Levothyroxine and it made me really ill, I still get anxious sometimes from time to time but I am 100% better than I was before I switched.

Ps I am on 125mg.

[SleepyDumpling]

Thanks for the advice guys. Well I've had another blood test and I feel hypo again. Despite being on a dose that previously made me hyper! I asked a GP at my practice who standing in for mine and he said he'd never had problems with synthetic T4. I should have asked how long he had been taking it! Needless to say he was less that helpful. I've therefore decided to get a private appointment with one of the listed doctors with the hope that I can get this yoyo situation sorted on NDT. Fingers crossed x

<b>Updated on Sep 17 2010 2:16PM:</b> I meant to say I asked the GP abput a trial of NDT.