This will make your hair curl - if you have any left.

Sweet nothing.

Sorry to be so blunt but I am fed up with feeling ill due to incompetency and so called lack of funding for patient care etc.

Jean

I had to go privately to get the TsH, T3 and T4 done.

Prior to that the TSH and TPO was done due to an eye problem and the incidental finding of a multinodular goitre on a ctpa scan to exclude a pulmonary embolism.

I have much to thank that opthalmologist for.

Since then it ihas been a mission to convince drs that the T£ and T$ need doing and furthermore must be done together.

I was able to get bloods done privately.

They need to be done again however my health comes first so will have no choice than to go privately. I am not pushing this just stating what \i did in order to try to get some relevant decent treatment.

 

I too have to get my thyroid tests done privatley, but its wrong when they get sent back to ones GP as it is saving them money, but I do make sure the company I use send me my results back by email which has a code. My results get sent to me the same day as my blood tests as thyroid tests are done on site.

I feel the same as you but I feel sure that thyroid patients are descriminated against.

As Jean pointed out, basically sweet nothing, well, usually you get TSH and T4. I call such doctors TSH and T4 doctors and advise everyone to steer clear of them. They will put you on Levo, never at your correct dosage - because they never measure anything that will let them know.

What I do twice a year is pay for a full thyroid panel. It's a bit pricey but it's not too bad and well worth it. They operate in England too. It's all done  via the Internet. They let you know your closest blood draw clinic, you go there and a few days later your results are e-mailed. Study up a bit on everything (Google it) then clobber your doctor with the data. If s/he doesn't know what to do with it, keep going to doctors until you get one who does - your well being will depend upon it - maybe even your life, so don't be shy. I had to do it, I hated to hurt anyone's feelings but I got so low I thought I was dying fast. I finally found one (god bless her!) and within a day I became normal, (just like lucky Hillary).

Doctors not well educated in this field will put you on Levo, then prescribe you anti psychotics because you "think" you are ill, statins for your blood pressure, sleeping pills for your insomnia and god knows what for your arthritis and muscle pains. Do all you can to avoid that black hole.

Thanks for this.

Are you in the USA as I notice you have written that this Company operates

in England too.

What treatment is available for a fluctuating thyroiditis I wonder.

Does anyone know?

Jean

I feel despreate at being told this moprning that I have a fluctuating thyroiditis. Does this mean I can never be treated?

Many thanks

Jean

Hi Jean,

Most importanly, please don't be worried, you can get treated even when you do not have a thyroid -like me.

The first thing which comes to mind is to check your adrenals. Adrenals put out Cortisol and that DOES fluctuate during the day: High in the morning low about mid day, a bit higher mid afternoon dropping off to not very much at all by bedtime. Sleep and rest replenishes the adrenals - which is why it's high again by the next morning. The reason I am spelling this out is to make sure that the fluctuations you are experiencing are not in sync with this pattern, this would mean that your problem could be adrenals and not thyroid. Just to make things more complicated your thyroid works in opposition to your cortisol level: cortisol high, thyroid low and vice a versa.

Beyond that you will have to work with your doctor because that is going beyond my knowledge of the endocrinological system.

OK, I will sign off now and try to send the link.

LAHs

Thank you very much.

Kind regards

Jeanx

Prednisolone for the arthritis and muscle pain, but have just stopped taking that. It appears that prescribed drugs are on prescription as they cause so many side effects so if my GP comes up with a drug I point out the long list of side effects and turn then down. I get my tests done in Guildford and they do them in their lab and email them to me the same day by a coded pdf and fax them to my GP. At one time the NHS took 10 days to get results of thyroid tests but never the FT3. I have also been referred to an Endo but have plenty of research to take to her.

Thanks Kathleen, Prednisolone.

Shortly after starting Levo two years ago I suddenly had this colosal pain in one knee, even when I was lying in bed with just the weight of one leg resting on the other. It kept me awake all night the pain was so bad. I went to the doctors who sent me to the Arthropod (slang term) who said, "Oh you have arthritis!". "Just like that", said I, "I thought arthritis was one of those things which crept up on you slowly not suddenly blasted you out of bed!". He didn't have an answer for that, he said it was bone on bone, all my cartiledge had disappered! I was devastated, just like that you get bone on bone arthritis? He had no answers and just prescribed me some pills. I was  so sceptical I didn't take them, but I did suffer from joint pain and muscle pain for the next  two years until I finally refused any more Levo because it was making me sick in so many other ways -  I believed I had arthritis, silly me. Within an hour of  takng  my first Armour pill I had no more "Arthritis" I also felt more saliva in my mouth, evidently the Levo was "drying out" my joints - well, I don't know that for sure, but it certainly felt that way.

Nothing would surprise me anymore about the side effects of medication.

There are different types of Arthritis and an infection which thyroid patients are susceptipal to can also cause sudden arthritis. Unfortunatley taking NDT has not helped with my joint and muscle pain. I used to suffer from a lot of dry mouths in the night and since Prednisolone was started my teeth are rotting away. I have had to go into hospital to have extractions and the first time they gave me adrenaline injections, despite me advising them not to. At this time too I was suspected of having latex allergy which was later confirmed as MBT ALLERGY. A few days after this not only did I have a lot of pain on one side of my teeth but I almost collapsed from Atrial Fibrillation, and I was taking T3 only at the time. I was taken into hospital as an emergency and spent about a week in high dependency unit. They stupidly took thyroid tests not long after taking my last T3 so my tests would have been all over the place, but they blamed the T3, but I am sure it was caused by adrenaline injections so AVOID. They also changed my thyroid medication to T4 and T3 plus warfarin, and other medications, but I soon changed back to T3 as it was not helping and my blood tests even showed exclamation marks but to the ENDO they were OK. I have dispenced with all those drugs.

Now Prednisolone I was on a much higher dose and I experianced indigestion and I was told that Prednisolone along with a high hiatus hernia had caused erosive gastritis, but I think too I was also on aspirin for the AF. Later on having been put back on aspirin for another spell of AF I ended up bringing up blood, so beware of aspirin.

Following on from the pain in my bladder and abdomen I am now losing blood so don't know if it could be another polyp or to do with the mesh TVT. I will though change my appointment on Tuesday as its with a male Doctor.

Dear Kathleen:

I am an RN and I live in the USA.  Steriods (Prednisolone) can cause lot's of problems when taken long term.  It actually will cause the bones to be brittle and the damage done is NOT reversible at all.  Doctors just throw a drug at us, in hope of keeping us quiet.

Pain can be from a myriad of problems.  Osteo Arthritis is not treated well by steriods and avoid them, as it can also cause adrenal troubles also.

Safer drugs are available such as Naproxen Sodium or any non-steriod drug. If your thyroid meds are not working you can have muscle aches just from that alone!

XO Shelly

The pain I was in was so bad that I could not lift my right arm up which has had most of its nodules removed. At first I attended a clinic where they give exercises but I was in too much pain for them to touch me and on struggling to get out of a chair people will try and grab hold of your arms and pull you up but I had to make them stop. In the end I got sent to a specialist who gives injections and although I could not lift my arm the specialist could lift it for me. He gave me an injection which I had to sign for and pain got better including the groin and back pain. I refused to have Prednisolone until I had been up to London to have a polyp dealt with and as I had nobody to bring me back it meant staying in hospital overnight in fact it was not until the afternoon I was sent home, but there was a nasty spell as my BP shot up so they gave me amlodipine, and there was also a patient in  the next bed with a bad chest. Within days of being home I ended up in the local hospital with pneumonia. I had rung up the emergency number as my temp was up and they expected me to go out in the freezing cold and hop on a bus. I decided to go to bed and if no better attempt the trip in daylight. The problem was that on laying down I experianced pain inmy lung and totally out of breath. I managed to ring the number up in and they could hear I was having trouble breathing and sent out an ambulance. Another problem was that I live in a block of flats which has a security system and my control to let them in was in the hallway which I could not get to. I had also already given them my keysafe no and told them where it was but they managed to get in and then went back out to my keysafe. These security systems can cause more problems, but since then I have had one handset moved to my bedside and then purchased another handset to come into my lounge. I am leasehold so have more control over what I do.

It was after this that I had no option but to go on Prednisolone which they said was for Polymyalgia.

What is the good of having a Doctor who simply throws drugs at us, as it takes one back to a man in a horse and cart flogging his potions.

Dear Kathleen:

Wow, sorry to read what happened to you. Pneumonia alone is awful enough. I am sorry to hear what you went through.

Polymyalgia is also bad.  Steriods would reduce the pain and inflammation you had.  Yes, the steriods will help with this situation.  I hope you can get well and won't need them that much longer.

Steriods have good and bad to them. Short term they are okay, I was just saying the long term problems and what can happen.

I hope you continue to get well.  God Bless, Shelly

 

OMG

Well you are still here despite this gross experience .Keep positive.

Jean.

Kathleen

What was the hospital in London that you were in re your polyp?

Jean

Jean can you send this question in a private message as I am not sure if hospitals can be mentioned.

Hi Kathleen

That is the problem I have with this laptop, by that I mean for some obscure reason this laptop will not allow me to private message . However I am able to respond to PM!!!!!

Kind regards

Jean

Hi Kathleen,

I can't do PM's either although I can respond to them. I thought I was just being thick.

LAHS and Jean

Can you see an envelope on the right side of the message underneath our coloured boxes, if you can put your mouse on it and it says send private message then click on it and it takes you to where you can send the persons envelope that you clicked on a private message. I cannot see this envelope under messages that I have placed but I would not want to send myself a private message.

Some of these envelopes are outside the actual message box and have deduced that these ones are the moderators.

Have you got your forum settings set to allow PMs? To find out...click on the picture of a head at the very top right hand side of a discussion (your name should be on the left hand side).

I found that I have to have my phone in the horizontal position (I.em. landscape) to be able to send PMs.

Phone is playing up. That should have said: i.e. landscape

If I click on the head in the red area on the right hand side of this discussion it will unfollow it. In my account I am ticked to receive PM's

No I have not. Would you mind explain the steps please?

Many thanks

Jean

Not in the red area. Above it. There is a bust thing. Have you gathered that I'm not that au fait with this?