Hi I had a total thyroidectomy way back in October 1999 due to Amiodarone a drug designed by the devil to combat Atrial Fibrillation. To be fair in those days there were no treatments around and perhaps this was the only drug available then. I won't go into details as this post will take too long and put people off of reading it.
After six months on replacement T4 I found I got tired, depressed and all my muscles ached and I could not turn my neck, I had to voluntarily give up driving for two years . In those two years I lost my job and for the best part I just sleep ed all day. I would finally wake up, strangely around the last meal at 630 pm then I would eat and eat and then go to bed and wake up the same, the next day, exhausted.
after seeing all the drs I could see on the NHS, I was informed my TSH was ok and it was clinical depression.
Then going to a nHS Psychiatrist who says no, you have not clinical depression you have a bit of anxiety but not CD.
You see the consultant and you get told all your bloods are ok, go for a walk each day and you will feel better.
Thats what happened to me.
I have found that the NHs has four treatments only.
1.T4 measure your TSH
2 T4 measure your TSH
3 T4 measure your TSH
4 anti depressants.
having just joined the group there doesn't seem that much of a change in these years.
In my case, I was able to go to Joburg RSA and see a brilliant dr there who got me out of bed and back to work. the only thing is to feel well my TSH is depressed. Now I have an uphill struggle to get my GP to see me and try and get thryroixne on the NHS. I have had times where one of the GP in my practise, has banged on his desk telling me its dangerous to have a suppressed TSH but `i have no alternative, my heart rate is not fast , I am not losing weight and i have no tremors in my hands. But its no good the NHS wants a readable TSH.
I had to go the private route and now my funds have run out so with what I have learned I am using my education and self treatment and I am getting by.
If there are any body on this board with no thyroid can you get in touch with me to talk about their treatments.
Cheers
John
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Hi John, I had thyroidectomy in 2006 and have been much like you until 18 months ago when I asked for a T3 test, which came back under the reference range, yet my T4 was over range. It was obvious I was not converting T4 to T3, the active hormone used by the body. I saw an endo, who gave me T3 to combine with a reduced dose of T4. I felt no better and this sorry saga has gone on and on...
I have also tried Armour thyroid which is natural dessicated pig thyroid and most people with TT find this better but not me. I am currently feeling reasonable but no stamina or energy with a higher dose of T4/3 but have a problem because I was under the late lovely Dr Skinner and his clinic will now close.
Tomorrow I am seeing a new endo in London. I live in hope! That's my story. Others may come along with better news. I hope you find the perfect combo of meds. That is really what we are all searching for. x
I hope you get a good response, my experience is that you will be told you don't need T3 . I hope Your Tsh is in limits other wise you won't get anywhere.
I live in Essex & although I haven't had my thyroid removed I have Hashimoto's & one endo I saw actually examined me & said he couldn't feel my thyroid & that most likely it had almost been destroyed by my immune system. I too was only given T4 but after 7 years of battling the system I finally found an endo who prescribed Armour Thyroid which I've been taking for nearly 3 months now. I still have some residual symptoms - dry skin, itching, itchy ears occasional numb hands & joint pain & still can't lose weight but I am generally feeling brighter am more alert, less tired and can keep going without an afternoon nap now! Not quite the miracle I was expecting from all the hype but a big improvement on T4 only therapy.
Hi ya, can you get back to me off line and tell me who the drs was please.?? I live in Essex and so far I have not meet anybody to help me . It wasn't and Indian dr at Brentwood he was good very good but he was worried about his position and would only give me t3 for a small amour of time.
Cheers
John
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Hi John - please email Louise for a list of helpful doctors in your area
louise.warvill@thyroiduk.org.uk
Meanwhile, I feel your frustration, although I only had a partial T I am not medicated as the almighty TSH is within range, despite my obvious Hypo symptoms. Many folk after a TT report improvement with addition of T3 or NDT.
You should find a doctor to support you - they ARE out there!
All I can do is support my failing half a Thyroid by ensuring my vitamins and minerals are not low (as tends to be the case with HypoT, everything slows down inc absorption) - have you had irons, ferritin, folate, B12 an Vit D tested too (for starters) these may help your meds work better - don't forget to take meds away from food, and some find they are better taking them before bedtime. You probably know this already, but have to say in case it helps. J
Hi John,You need TSH, T4 and FREE T3., done for the thyroid. , always have ranges as vary between Labs.
Amioderone is known to cause Hypo, but known as a last resort drug. If under Caardio , then you should also be under an Endo ie depends how bad your A.F is and other heart problems? Have you had an ablation for the A.F? It can work for some years, but still vital to have the anti coag. as it can restart any time. Otherwise, I am afraid you are stuck with the Amioderone. I have been on it, Beta Blocker and Digoxin for that, other things for other cardiac problems. A cardio, not a surgeon can do that. the ablation.
I have been all through this and had an ablation, I had to go to France to the guy that invented the procedure and I had to pay for it as the NHS at that time did not support the operation. For some reason my FT3 and FT4 are not tested by the NHS in my area only privately. I must say that adding 5 mcr of T3 has made me a lot better. MY TSH is still suppressed and at my medical practice and the Endo in my area will not tolerate anything but a normal TSH.
Patients who have thyroid cancer take a suppression dose of thyroid gland medication. Some of us who do not have cancer feel better too with a suppressed TSH.
If you email louise.warvill@thyroiduk.org and ask for a copy of Dr Toft's article in Pulse Online (surely your GP cannot ignore it) it does say (Q6) that some need a low or suppressed TSH or the addition of T3.
Hi, I had my thyroid removed in 2005, I had been underactive for approx 7 years, piled weight on, slept all the time. I had previously been diagnosed with depression which was not true. I took t4 for 8 years and felt awful, lots of appointments with the Dr and Nhs endo who all said no to t3. By march 2013 I'd had enough I had nothing to lose so I purchased my own t3 and within two weeks I lost half a stone. I noticed my weight was no longer going up and up and spiralling out of control and I felt normal, plenty of energy etc. I joined a slimming club in June and I've now lost altogether 2 stone, last year at the same club I couldn't even lose a pound. I feel I definitely have a conversion problem but unfortunately had to give up on the Nhs because nobody was interested. X
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