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Thyroid UK
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From T3 to Levo

I've been self medicating for 2 years with T3 only meds for Hypothyroidism and high RT3. I was recently been seen by an endocrinologist as I was having intermittent dizziness and heart flutters and I needed advice on my dosage of T3. Unfortunately, this endo doesn't not or cannot agree with T3 or NDT medication.

Following advice from the endo I came off T3 over an 8 week period prior to the test. I also stopped supplements and vitamins. It is now 3months since I've taken any thyroid medication.

There was a whole ream of tests but below I've put my thyroid results and out of range labs. Endo says im subclinical hypothyroid and is advising my GP to give 25mcg of liquid Levothyroxine with retesting in 8 weeks, at this time I will get FT3 tested too.

Im wondering if 25mcg of Levo will be enough. I've had a slow decline in health and fatigued since coming off meds. I have to wait for my GP to receive the consultants letter before I get a prescription. I do have the tablet form of Levo and wondered if I should take this is the interim period whilst waiting for a script. I'm also wondering if I should add in some T3....will this affect results of further blood tests if I do?

TSH *10.41 (0.30-4.20)

FT4 17.3 (12.0-22.0)

No FT3

No RT3

Cortisol 9am *510 (172-497)

Vit B12 *1034 (160-925)

Colestrol *5.9 (<5.0)

19 Replies
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As I understand it, if someone who doesn’t have hypothyroidism takes thyroid hormone replacement for a while, it takes around a fortnight for thyroid function to return to normal.

You’ve been without thyroid hormone for 3m. There’s nothing subclinical about having a TSH of over 10. Your endo is an absolute sadist.

25mcg?? Why on earth would he think that’s going to be enough?

Do you know what your results were before you came off T3? How much were you taking then?

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I slowly reduced T3 meds over 8 weeks. It's now been 4 weeks without meds, in that time I've had a follow up with endo and blood test which were reported back to me by letter this week. My GP hasn't recieved a copy as yet therefore I can't get a prescription.

Sept '17 I was on 75mcg T3 (self medicating) blood result are below. I was unable to fast for these tests as my GP arranged the bloods on the day I visited her so I'd had a small amount of T3 3 hours before the test. As you will see T3 is well over range in these results. I reduced down to 62.5mcg after this and was on 62.5 up until 3 months ago when endo suggested I reduce by 12.5mcg a week until off them completely in prep for the blood tests she'd ordered. I've not taken any meds for 4 weeks with a decline in health in that time.

TSH <0.01 (0.40-4.90)

FT4 <5.2 (9.00-19.00)

FT3 9.2 (2.60-5.70)

I'm confused now and don't know what to do regarding Levothyroxine. How much do I take and do I add in T3!? If I do add in T3 what amount should I take and how much Levo with it? I know I'll only get a prescription for 25mg of Levo daily from my GP as this is what the endo is suggesting.

Thank you for your help.

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It does look as though you were overmedicated before, but a reduction T3 should have done the job. I suspect you need at least 100mcg levo, not the 25mcg which the starter dose is for frail elderly people. Can't even guess what you need now if you add in T3. Your endo will not understand your bloods if you do (but doesn't sound much use anyway)

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I have now read your results and your FT3 was too high nearly double what it should have been. You only needed to reduce your dose downwards slowly to put that right and feel better.

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You aren’t subclinical! You are hypo. Period. You need your free T3 range. But most likely you will need T3 again. What is wrong with these doctors??

Sorry. More than T3, you need a new doctor.

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Nutripea1220

I've posted September 2017 results above. I won't get another test until I've been on 25mg Levo for 8 weeks when my GP will retest thyroid labs.

I agree totally with you, I'm fully Hypo. My temps are low, my hair is thinning again, I'm so cold and fatigued I just want to go to bed. My inner self is telling me to go back on T3 but the lack of understanding with my doctors is pushing me to follow their advice. I'm thinking a combination of T3 and Levi might be the answer.

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Very unlikely that it will be enough. There's nothing subclinical about your results but free t4 is surprisingly high for your TSH. How much T3 were you taking? You need about 3 or 4 times as much levo as T3 to get that same result. If you were well, why did you change and see this endo?

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Angel_of_the_North

I was initially on 75mcg T3 2 years ago. I had a few health problems last year not relating to thyroid I don’t think. My ferritin was massively high and I had lots of pain in my joints. My ferritin has come down to being in range over the last 6 months. I also felt shaky and breathless with vertigo for 3months before Christmas. Since the September results I reduced from 75mcg of T3 slowly to 62.5 then off completely under the guidence of the Endo. My temps have always been below normal throughout I’ve not had normal temps for years. I am constipated unless I take magnesium, etc. I decided to see an Endo who was highly recommended because I wanted help with T3 monitoring but, of course, that was not going to happen. Hence I’m now in a place where, if I believe the medics, I’m subclinical and do as prescribed or I go back to self medicating.

I actually think I have a conversion problem and was hoping this Endo could assess if this is the case.

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I'd get proper tests done, TSH, free T4, free t3 and supporting vits and ferritin, rT3 if you think it is problem from Medichecks (cheap on Thursdays) or Blue Horizon and post in a new thread. I sometimes had relatively high free t4 and bottom of range free t4 (but TSH under 1) when on no meds and felt dreadful, but I have secondary hypo, so TSH doesn't do anything. So I wouldn't be put off by the OK free t4. If your endo hasn't bothered to test free t3 he's not going to be much use. You said you'd stopped supplements, but make sure you haven't atken any biotin for at least a week before bloods

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Angel_of_the_North

Thank you

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Why not pay for private tests and then post your results on here for further help.

If you have been self medicating why on earth go backwards with the bad advice of a Endo that's pretty useless.

It's a pity that you didn't do it before the visit.

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Bunnyjean

I do agree with you. However, I’ve been sick with vertigo and other problems and started to worry I was on the wrong track with self medicating.

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Sorry I didn't mean to sound harsh good luck

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Not at all. I absolutely welcome your input.

Thank you Bunnyjean

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Lynn I too sometimes get anxious about self medicating - though I do have the support of a wonderful doctor who lets me judge by how I feel. The dose is up to me. Said that, T3 changed my life. I hope you find a doctor who supports your taking it - they do exist.

What I have learned is that sometimes, if there are say 7 symptoms, only 5 will get better, and more medication may fix the 6th and 7th but will negatively affect the first 5... so we need to find a happiest medium not perfection. But still, T3 is a godsend.

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Thank you Nutripea1220

I haven’t yet found a doctor who supports T3 meds. I needed to see the endo to get some clarification on where the problem is..I think I have a conversion problem but unfortunately I didn’t get much back other than being told I’m Subclinical hypothyroid and 25mcg Levo is the dose.

In the past I’ve tested high for RT3 so it was my decision 2 years ago to self medicate with Cytomel as levo was the only drug on offer from my GP.

I will try a bit of levo but I’m going to add in T3. I’ll play around with it on how I feel. I’m all over the place at the moment, brain fog, hair loss, fatigue, etc,. I’m glad to be back on meds after endo brought me off them for a period of time for the lab tests.

I’ve started back on 25mcg Levothyroxine + 6.25mcg T3. I do need to suppress my high TSH, I’m sure I’ll feel better when I do.

Fingers crossed I’ll be feeling better soon.

X

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I was losing hair too. I’m now on 175T3. Was taking 50 initially, went as high as 300, and backed off to 75. At 300 I was losing a bit of weight but otherwise had no hypo symptoms. I don’t need to lose weight currently. I take t3 only. Levo (and t4 in general even on Armour) gave me rashes and made me gain weight.

We are all so different - which makes giving advice so difficult.

Since being on t3 my hair is much thicker and down to my waist, so it definitely helped.

Good luck. Happy to PM you the name of my doctor in NY. He does phone sessions. He’s really really lovely. About 70 yes old and very caring.

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Ps: my free t3 is also well over range which my doc says is meaningless as it doesn’t tell us what gets into my cells. Whereas how I feel does tell us.

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It's interesting because I'm sure I'm pooling too. I had high FT3 and high RT3 before starting on T3 meds. Without meds my TSH shoots up.

I have to agree with you, it's definitely how you feel that matters most. Some days I felt slightly over medicated when on 75mcg. I just couldn't find the right balance. My temperature has always been low. I tried raising my dose but didn't feel any better.

There are moments where I seem to lose the right path.

In my heart I think T3 only medication is my way forward. I can see I'll be dropping Levo at some point.

It's nice to know you have a good medic. I'm UK based and finding it difficult to get someone with that amount of knowledge. Although, I did see the wonderful Dr Peatfield a year or so ago. Unfortunately, he's not able to prescribe.

If things go wrong for me I'll be in touch.

A massive thank you.

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