what is the most effective form of t3 - Thyroid UK

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what is the most effective form of t3

tiredandemotional profile image
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tiredandemotional
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galathea profile image
galathea

I imagine it is intravenous injection, so it avoids having to be absorbed in the stomach.

why do you ask?

G

tiredandemotional profile image
tiredandemotional in reply to galathea

Hi Galathea, I have been taking Goldshield Tertroxin since 1984 when I was diagnosed with a problem converting T4 to T3. I was originally told to take 20mcg per day but found it had no effect. I stopped taking it after about 1 year or so and continued to be investigated for ME. I saw Dr.P in 2000 who placed me on 5mg of hydrocortisone and 2 weeks later I began to take Armour Thyroid. I felt wonderful for the first time in years. Dr P kept increasing my H'cortisone levels in order to raise my temp, pulse and blood pressure which were 35.2c, 40 and 65/40. I started to put on weight and became puffy etc at about 40mg of H'cortisone, but we could not raise my vital signs, then the demonisation of Dr P began and he stopped seeing patients for a while. I stated seeing Prof Grossman at Barts supposedly a top endo!!!! I was given an insulin tolerance test, which showed v low but within normal adrenal range so was brought off H'cortisone. Thyroid function low but within normal wanted me off T3 and T4 started to reduce and all low thyroid symptoms returned so refused to come off medication. Kept telling them to look at me clinically never mind blood test results.

Would not put me back on H'cortisone, kept seeing him for years. Never felt well on G'shield T4 and G'shield T3 but persevered. My skin turned black in 2007 Prof Grossman said it was low D3 I thought it was low adrenal function. Test showed V low D3, less than 21 so intravenous D3 given. Senior nurse at Barts so concerned about my treatment she advised me to move to different Endo, Prof Chew which I did.He tested me for wierd and wonderful illnesses, bloods showed nothing, it was all in my head. I thought I would kill him. I demanded that he look at me clinically, went through my whole auto immune history with him, suspected ME, low T3 conversion, eye disease which can only be contracted by people with MS, Lupus or Rheumatoid Arthritis, even though my bloods showed no markers for any of these diseases. He just wanted me to reduce my thyroid medication, never mind how I felt. Desperation again. Then......

Severe stress because of battle with Insurance Co. and Loss Adjusters over smoke damage to my home and possessions brought about the inflammation in my left sighted eye, I had lost the sight in my right eye in 1978 because of misdiagnosis by my GP and junior hospital doctors. I begged my GP to put me on v low dose of H'cortisone which she did as I believed the terrible levels of stress were burning up what little natural cortisol I was producing. Prof Chew referred me back to Moorfields Eye Hospital, Mr Parvesio, the Scleritis/Posterior scleritis expert. We could not get the inflammation to go down so we kept increasing my H'cortisone levels until we got upto 180mg per day. I had refused to go on Prednisolone because of the terrible side effects I had suffered previously. All doctors were panicking about steroids and wanted me to go on immune suppressing drugs, eg chemotherapy! I resisted for months and was finally put on Azathiaprine, a supposedly well tolerated drug. I cannot tolerate generic drugs, apparently most auto immune patients can't, I always get side effects, usually the most serious ones. I got lumps on my feet, one of most serious side effects, when treatment should be stopped immediately, told all the different doctors/specialists, not one of them thought these were side effects, but fatty lumps/lymphoids etc carry on treatment. Side effects getting worse, losing hair, neuropathy, vasculitis, nausea, shingles, falling asleep all the time etc. Then told I had osteopaenia, given generic Alendronic Acid, had most severe side effects, swelling of face, eyes, throat etc, told to increase H'cortisone to 200mg so that i could breathe etc, blood pressure then rocketed, 240/200, put on generic Simvastatin, more terible side effects, felt terrible, still trying to work, then put on Ramipril, generic, for cholesterol, more side effects, kept asking to be taken off Chemo drug, doctors more worried about H'cortisone which I was reducing, no one was interested in terrible side effects I was suffering. In January 2011 I told Moorfields I wanted to come off Chemo because of side effects and no reduction in inflammation. Was told to stop immediately, I queried this as leaflet advised stopping gradually, was told to stop as drug not controlling inflammation. Felt dreadful, terrible chemo brain and real cognitive problems, stopped Simvastatin after very short time and Ramipril after 5 months as still having terrible side effects similar to those with chemo drug. Am unable to take any medication only branded, including co codamol, aspirin etc and am still suffering side effects. Wish I had never touched these "well tolerated" drugs, they nearly killed me. My GP says she does not know how I am still alive, some help when your life has been destroyed!!

Had MRI scan in Jan 2011, have bad brain lesions which they believe came from original eye disease in 1978, also bone thinning in right hip. Have been checked for MS, Lumbar puncture, do not have this, checked for Rheumatoid Arthritis, no blood markers but scans showed its presence, (chemo had suppressed my body's ability to fight RA), apparently you can have RA even without bloodmarkers, nobody had ever told me this before.

Have managed to get my H'cortisone down to 80mg per day, have been on that level for 6 months or so, am trying to drop down to 75mg but am getting swelling in my left (sighted) eye.

Have been taking Armour thyroid from my GP for 16 months and have started back on T3 after reading stuff on this forum, but to be honest I don't know where I am at the moment. I have all the signs and symptoms of Crohn's and Coleiac disease,( but none of the markers again), which apparently is common with long term auto immune disease, I have to take co codamol to slow down the transit of food and medication through my gut. I can't tolerate gluten, soya, starch and so much more, but since stopping work 18 months ago I can't afford all the supplements I was taking and have felt terribly depressed for the last 6 months or so and basically do not want to eat. I do so to take my tablets and because I know I have to.

Because of terrible cognitive problems due to side effects of drugs I feel unable to sort my health out at the moment. I am limping through each day, I need help. By the way both of my sons have autism and I believe thyroid problems and RA. Feel free to share this info if you think someone can help me.

I hope I have not gone on too much.

PinkNinja profile image
PinkNinja in reply to tiredandemotional

You really have been through it! I'm sorry I don't really know how to help. There are a couple of other member who have multiple complicated health conditions so maybe one of them may see this and be able to help.

It sounds like the Armour and hydrocortisone was working best for you. It may be that fiddling with the doses of those is part of the solution. It might be that you needed higher doses of Armour rather than the hydrocortisone. Your vitals would be low if you weren't getting enough T3. It would be helpful to see your latest thyroid blood tests with reference ranges because that might give us a better idea what is going on. What doctors call "normal" isn't necessarily what's right for the individual patient.

Some people with autoimmune diseases find that low dose Naltrexone works well for them but I don't know if it would be suitable for you.

This does sound very complicated so you might be best finding the name of a good doctor who can cope with such a complicated case. Perhaps posting a question about this might get you the answers you need.

Sorry I couldn't be more help.

Carolyn x

tiredandemotional profile image
tiredandemotional in reply to PinkNinja

Hi Carolyn, sorry it has taken me a while to get back to you but I couldn't find my blood test results until earlier today. Anyway, here they are from August this year.

FreeT3 9.8

FreeT4 18.3

TSH 0.19

My Vit D is 100 normal, I supplement with 1x 20,000iu caps twice per week and daily B12 injections as well as high quality multivits, B vits, selenium.

Hope this is of some use, many thanks,

Lyndene x

tiredandemotional profile image
tiredandemotional in reply to PinkNinja

Hi Carolyn,

Forgot to put in the ranges for my blood test results:

Free T3 9.8 Range 3.5 - 6.5

Free T4 18.3 Range 9.0 - 24.0

TSH 0.19 Range 0.35 - 5.0

Vit D 100 Range 75 -- 200

Many thanks,

Lyndene x

tiredandemotional profile image
tiredandemotional in reply to galathea

Galathea, have you got my reply? I am not sure if I have sent it twice as my laptop is losing signal. Can you let me know?

PinkNinja profile image
PinkNinja in reply to tiredandemotional

Hi. It did post. Three times actually ;) I have removed the copies. I'm sure Galathea will respond once she's online again.

Take care :)

Carolyn x

galathea profile image
galathea

Blimey. where do you start with that lot.... how do you even remember it? I will have another read and see if I can see anything but I'm no expert.... Just posting this to let you know I have seem=n the message and will get back later....

G x

tiredandemotional profile image
tiredandemotional in reply to galathea

Thank you for any help that you may be able to give me.

I forgot to say that I have recently managed to get a diagnosis of Hypermobility, a form of RHEUMATOID ARTHRITIS and Ellers Danlos syndrome and the consultants believes I have POTs and have some autonomic nervous system disorder as well. I'm currently waiting to see the consultant for this, there is only one working for the NHS in the whole of the UK.

Any long term auto immune disorder seems to cause a multiplicity of other medical complications; a cascade effect.

I believe I have had Hypermobility/Ellers Danlos etc and a thyroid disorder since birth that has never been properly diagnosed because of wretched blood tests and incompetent doctors.

It has been 57 years of hell and certainly since a terrible viral attack at the end of 1974.

Lyndene x

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