feeling completely alone - t3 only to treat rt3?

[6392TTjsls]

this is my first post as I'm new to the community. i've been self diagnosing as I can't afford insurance. it's been about 6 years. through that time i have been taking t4 only but since the end of 2014 i have had an alarming number of symptoms resurface. i'm considering taking only t3 starting tomorrow as i have numerous symptoms of extremely high rt3. any help would be greatly appreciated!

[6392TTjsls]

Thank you reallyfedup123. how do i self test for ferritin, b12, mag, d3, vit c are normal. i've been supplementing for a long time with these. i've gained 5 lbs. in the last 2 weeks and can only get out of bed when it's dire. do you think it might be helpful to cut out the levy and take only t3?

[6392TTjsls in reply to 6392TTjsls]

sorry, levo not levy...

[6392TTjsls]

Going to sleep now. i've been awake for 12 hours, LOL.

[shaws Administrator]

Welcome to our forum

Have you had any blood tests with the results including the ranges? If you have can you please post them as it would be helpful.

If you've been having problems for six years, you've come to that decision due to your clinical symptoms.

Have you been taking levothyroxine? If so what dose.

[6392TTjsls in reply to shaws]

Thank you shaws. I don't have current results to post. i had tests done 2 years ago and at that point i was put on antithyroid meds. i have taken levo for the last 6 yrs.

[6392TTjsls in reply to 6392TTjsls]

it's also been 6 months since my last cycle.

[6392TTjsls]

125 mcg of levo per day.

[shaws Administrator]

I take T3 only and feel the benefit of it. I prefer it to levo.

It's easy to switch over to T3 only. 25mcg of T3 is equal 'in effect' to 75mcg of levothyroxine, but I would take 1 and a 1/4 tablets initially. Take your pulse and temp before you begin and several times during the day until you feel you are on the right dose. You can take a little more every 2 weeks. If you take a little too much T3 just drop down the dose slightly. T3 is absorbed into our bodies quickly but the effect on that dose lasts between one and three days. Sometimes if we feel too hot we might think we've taken a bit too much but if we take our temp it probably hasn't changed. Some get palpitations, so reduce slightly. This is also a link which might be helpful.

Sometimes it might be difficult to tell whether we are on too much so don't rush.

I had palpitations etc on levo but they resolved with T3 and I hope you feel much better.

If you cannot afford a blood test for Vitamin B12, I would supplement. We cannot overdose and we are usually deficient in B12 and Vit D. With B12 we cannot overdose as excess is excreted but with Vit D I'm not sure so someone might know the answer to that. Iron, ferritin and folate should also be tested as it might not be necessary to supplement. B12 should be methylcobalamin, sublingual or spray - don't buy cyanocobalamin B12.

web.archive.org/web/2010103...

There are other topics at the top of the above link but some links within them may not work. The info is good particularly female problems etc.

Dr Lowe died two years ago.

[Hidden]

629TTisls,

Sorry to hear you are not well. RT3 is not usually tested as it is costly and generally we are able

to achieve a good thyroid health picture by testing TSH, T4 & T3.

If these test results are good and you still feel crap (like me) then you may have a problem with the converted active T3 getting into the cells for use (hormone receptor resistance).

As I understand it, this is when excess RT3 in made inorder to mop up all that unusable T3.

As reallyfedup123 has already advised, it is imperative to maintain optimum levels of vit B12, vit D, folate and ferritin as any deficiency can stop the body from utilising thyroid meds & hormones properly.

Another important factor to consider is your adrenals health as low cortisol (like mine) or high cortisol levels can effect the workings of thyroid medication too. There is some thought that any thyroid problem should not be treated without considering the adrenals and unfortunately it can be difficult and lengthy to increase adrenal health.

If your body is not using T3 you need to address why and treat that first.

I would not recommend changing meds until you have your basic thyroid health needs met.

I understand you don't have health insurance but having thyroid hormones and vitamin & iron levels blood tested is extremely helpful in being able to see what is wrong. If you do manage these, then post results, and members can interpret and give advice.

Getting a saliva stress test would give you a further rounded picture on which to make sensible assumptions to either stay on present meds, add another or change cometely.

I hope you feel better soon

flower007

[helvella Administrator Thyroid UK]

Most people who mention not being able to afford insurance do so because they are in a country other than the UK. 6392TTjsls's profile does not reveal location.

[shaws Administrator]

They say 'usual beat is between 60 and 100 bpm.'. Athletes have less, some around 30 bpm. I think because we are unaware of our heart beat when we're well we may not know for sure of the exact number. We would definitely be aware if it's faster than usual as we wouldn't feel very well and take it or having palpitations. I know I'm fine if I am unaware of it but my normal is around 60 to 65bpm.

[shaws Administrator]

I have had so many ECGs, monitors, etc. because levo caused them. (previous to being diagnosed it was due to a TSH of 100 and undiagnosed (despite being kept in cardiac A&E overnight and discharged with 'probably viral with high cholesterol' a week before diagnosed (bedridden by this time). First aider pointed me in the right direction.

Previous to that I demanded that I would pay for a full body scan as there was something very wrong with me. GP tried to reassure me 'I will do a full blood test' Phoned me next week with 'your blood tests are fine' 'nothing is wrong'. The only problem was that not one of the 10 'consultants' did a thyroid hormone check. I hope you feel better quite soon.

[Clutter]

6392TTjsls, I'm assuming you are not in the UK. Can you order private labs for TSH, FT4, FT3 and rT3 or apply for Medicaid or other medical assistance for blood tests? As you haven't tested in 2 years it's possible that you aren't optimally dosed. If you do have rT3 it can take up to 14 weeks after stopping Levothyroxine (T4) for it to clear when it does it can be sudden and can make you very hyper if you are taking high dose T3 so be prepared to reduce your T3 dose quickly.

I had stopped T4 for RAI and although thyroidless felt better without it so I suspected I had a problem tolerating T4 only. I'd been 90% bedridden for 15 months and decided to clear any build up. I stopped T4 for 8 weeks, taking T3 only, and when I didn't feel improvement I stopped T3 too for 4 weeks. Within a week of being off meds symptoms improved and in the 2nd week they cleared completely. When I resumed T4 4 weeks after being off meds palpitations and breathlessness started within hours. It couldn't possibly have been build up or rT3 after 12 weeks off T4 so on the second day I added T3 which calmed the T4 adverse effects. I've been well on T4+T3 for 15 months but have a lot of rebuilding of fitness and stamina to do after being incapacitated for so long.

Ferritin, vitamin D, B12 and folate testing is recommended as they are often low in hypothyroid patients and can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms.

[6392TTjsls in reply to Clutter]

hi Clutter,

I'm not in the UK. paradoxically i make too much money to qualify for any type of financial assistance, but not enough afford the care i need on my own. i stopped taking t4 this morning and took t3 only. i guess i'll wait it out and hope to feel better. in a couple of months i will be able to get the tests and have labs sent through an outside facility. any advice you might have in the meantime would be welcomed.

[Clutter in reply to 6392TTjsls]

6392TTjsls, I can't really add anything to what I said above. Just want to reiterate that it can take 12-14 weeks on T3 only to clear a build up of T4 or rT3 so stick with T3 and don't be tempted to reintroduce T4 before then.

I went it alone when I came off T4. I didn't think it was working which was why I stopped T3 too for 4 weeks, but I may have spared myself an unpleasant hypo month and months of recovery if I had been more patient. I don't regret doing it though because it worked for me and I'm much better now. I hope it will be the same for you.

Paul Robinson's facebook group and Stop The Thyroid Madness both have information on rT3.

[shaws Administrator]

Where does that leave the patient, particularly ones who aren't capable of 'fighting' the establishment. No wonder we are angry. After all we help them to be educated (?).