Please can you advise me.....endo has upped my T3 and I'm now in unfamiliar territory..

My current dosage was levothyroxine 75mcgs and T3 10 mcgs.

I saw my endo yesterday and having seen my blood results he has asked me to increase my T3 dosage to 15 mcgs for 2 weeks followed by 20mcgs for 2 weeks then new blood tests. He is keeping my levothyroxine at 75mcgs.

My latest bloods are

TSH 0.13 (0.35-5.6)

FT4 10.20 (7.5-21.1)

FT3 5.40 (3.8-6.8)

So I am not to increase my levothyroxine as he is still concerned about the psychosis which it seems to induce. He has asked me to dose 3 or 4 times a day.

As T3 is fast acting does that mean that I will feel an immediate improvement? At the moment I just feel tired and completely blurry, can't concentrate at all and just don't feel right. Today was my first day of 15mcgs of T3 which I split into 3 doses and nothing awful happened...thank goodness.

Interestingly I have now a confirmed diagnosis of TERTIARY HYPOTHYROIDISM. Which I suspect has cropped up in passed members of my family.

I am frightened at the prospect of never feeling well again. Sometimes it's like I have dementia. My symptoms have included stammering, mild seizures, slurring, psychosis......all of which are lessening thank goodness. But this latest diagnosis has thrown me off balance. I always knew I had some form of central hypo but just assumed it was pituitary.

The reason for adding the T3 into the mix was a painfully slow conversion rate and the psychosis.

I know so many of you take T3 but it frightens me......

How soon after a T3 increase could I expect to feel a difference and is my endo raising too quickly. He wants to see me every 4 weeks because he realises that I need to get these meds in quite quickly because I have been replete for such a long time and the symptoms have been very disturbing.

What alerted him to the Tertiary Hypothyroidism was an FT4 and FT3 well below range but a TSH which refused to climb above 6.

My pituitary hormones are good, even though it's an odd shape!

Sorry for such a long ramble but it's late and inevitably my mind starts churning!

After all my meds today I just slept most of the day. When I'm awake I just feel drunk.x

[Heloise]

Hi mum, I really don't trust the ft3 result when you are taking T3 directly. When did you take your tablet in relation to the blood draw? When you are not converting, you can be raising reverse T3 levels. health.howstuffworks.com/hu...

" The thyroid gland could also appear to be functioning normally if TSH is the only blood level tested and it is being artificially suppressed by high cortisol levels [Source: Paoletti]."

Problems can arise if T4 is converted preferentially to reverse T3. Reverse T3 can bind to the T3 receptor, but it only has 1 percent of the activity of T3. T4 is normally converted into equal amounts of T3 and reverse T3. However, if there is a preferential conversion of T4 to reverse T3, the reverse T3 can act as an antagonist to T3 at the receptor level. This scenario leads to symptoms of low thyroid since reverse T3 can be considered inactive. Factors that may lead to a preferential conversion to reverse T3 include high cortisol, glucocorticoids, stress, excess estrogen and nutritional deficiencies such as selenium, iodine, zinc and iron [Source: Paoletti].

I don't know if your strategy is going to work until your adrenals and any deficiencies are improved.

[Hidden in reply to Heloise]

Hi Heloise, I had my bloods drawn 18 hours after last dose. My endo wants to see the FT3 higher.

I know I don't have high cortisol. It is quite low but not dreadfully low. Do you think I might be better without the levothyroxine and just on pure T3? It took me such a long time to raise to 75 levothyroxine and my endo is happy to keep it there.

I'm still working on raising my vitamins etc. taking supplements and doing all the necessary.

[Heloise in reply to Hidden]

drsaulmarcus.com/thyroid/5h...

This article indicates that hormone treatment really doesn't help this condition. Can you see a functional medicine doctor instead?

[Heloise in reply to Hidden]

Another doctor's videos I've been watching has really made me appreciate the fact that there really is NO thyroid disease. Your thyroid is fine and has slowed T4, etc. for good reasons. If your hypothalamus is behind this, understand that it is a sensory gland and committed to your survival. Usually it sends messages to the adrenal gland to raise cortisol and it also must be balancing it with TRH. For that reason you should probably look for whatever stressor the hypothalamus is acting upon instead of forcing hormones that may not help you.

youtube.com/watch?v=0JAdAOf...(Not working as expected?)

[Clutter]

Joesmum. There's no need to be frightened of T3. It is 3 x stronger than T4 but that is counted in your overall dose. 5mcg T3 is a tiny dose, but he's titrating to 10mcg slowly so you don't tip over. Your endo is looking after you well, so trust him.

I don't think you'll notice much from the extra 5mcg but when you're on the extra 10mcg I think you'll start noticing improvement. The brain loves T3 and cognitive function is often the first thing to improve as the brain sucks up what it needs and leaves the scraps to the rest of the body.

Thanks for explaining how he made the tertiary hypo diagnosis. I've long wondered about that.

[Hidden in reply to Clutter]

Thank you Clutter. I shall have faith. I know he's on my side and I feel very fortunate to have found him. I do need to trust more and also stop being frightened of the T3.

I shall keep you posted.

[faith63 in reply to Hidden]

Please try and see if there is a Pituiatry Center s you can have a proper evealuation .

[faith63 in reply to Clutter]

clutter..please read my other posts on this thread. I have been going thru pituitary issues myself. She needs further testing and further pituitary evaluation to determine if , she does indeed, have enough cortisol to handle her thyroid meds. It is not an easy blood test and a normal endo or GP doesn't know what to do. With a mishapen Pituaitary, you need stim tests, blood isn't accurate. For example.. if a person has a normal IGF-1 level, which is a blood test of the precurser to Growth Hormone, this would normally prove that they have a normal GH level, unless they have an abnormal Pituitary MRI. Then further testing needs done, unless then again, the labs show IGF-1 at the high end of normal. Anyone with this abnormal MRI needs a Nueroendocrinologist ..a pituitary specialist.

[Clutter in reply to faith63]

Faith63, I'm not sure why you are telling me. I don't know what tests and evaluations Joesmum has had.

[faith63 in reply to Clutter]

I'm telling you, because if she has not had proper evaluations done, than she does indeed need to be very concerned about t3 or raising her thyroid meds.. it could possibly precipitate an Adrenal Crisis. There is a warning that come with all thyroid meds that say that a person needs evealuation of their cortisol status before starting them..yet almost all doctors ignore this. I let you know so that if something happens, you aren't in any trouble, for telling her to go ahead and raise..not be afraid. That's all.

[Clutter in reply to faith63]

Faith63, Joesmum's endo is managing her dose and monitoring her condition closely, not I. She has been taking 75mcg Levothyroxine and 10mcg T3 for sometime so why would a 5mcg dose increase followed by another 2 weeks later precipitate an adrenal crisis?

[faith63 in reply to Clutter]

Raising thyroid meds or using them, without proper evaluation can indeed precipitate an adrenal crisis. If something happens, it is on her doctors head, not yours, i know. The doctors are not properly evaluating low cortisol and with her abnormal mri, it is very concerning. Maybe she has had all the stim tests, i high doubt it tho.

Here is a link to the warnings on Synthoid, which would cover all t4 containing meds..

rxabbvie.com/pdf/synthroid.pdf

There is one for Cytomel too, but haven't looked it up.

I think i may write a post regarding all this..just so people are aware.

[Clutter in reply to faith63]

Faith63, the warning is when starting Levothyroxine Patients with concomitant adrenal insufficiency should be treated with replacement

glucocorticoids prior to initiation of treatment with levothyroxine sodium. Failure to do so may

precipi

tate an acute adrenal crisis when thyroid hormone therapy is initiated, due to increased

metabolic clearance of glucocorticoids by thyroid hormone.

Similar warning is on UK Levothyroxine.

[faith63 in reply to Clutter]

Point is, people's cortisol is not tested routinely, before starting thyroid replacement. I mean, who's doctor does that? Also, you don't have to have zero cortisol, like with Addison's, to have an Adrenal Crisis, just low enough and taking thyroid hormone, can make it lower. Being Hypo makes it low too..if the Adrenal Glands are the cause. So it can be very confusing. Some good doc's are giving HC along with Thyroid Hormone, to start. It can be such a bad mess for people and we rarely get proper care, it seems.

[Clutter in reply to faith63]

Faith, I agree that doctors should check adrenals before prescribing Levothyroxine but this isn't pertinent to Joesmum as she has been on Levothyroxine for some time.

[faith63 in reply to Clutter]

i think it , may very well, be pertinent, because she is doing so poorly and has had an abnormal MRI, and didn't mention how she had her cortisol tested, if at all. More thyroid meds could cause a real problem, but her non conversion could block the action of any additional meds. T3 could be more problematic, than t4, because it is directly active, no conversion needed. I would hope she knows the signs of adrenal crisis.

[Hidden]

I have also done exactly the same by slowly uping t3 but purely for symptom control, I wish I had an endo to advise me properly as I have had to dothis myself, I too did not feel that much different on 10mcg but once i got up to 20 i noticed a massive diffierence, the best feeling in a long time was being able to get out of bed a 7am every day for a week and feeling awake when I did so. it was my mini miracle. I am 6 months down the line and have tweeked the times I take my meds a little.

I take three times a day too.

I take half in the morning and then two quarters one an hour before lunch and the other an hour before tea in the evening.

Good Luck your endo will keep you on the right path by the sound of it.

[Hidden in reply to Hidden]

Hello Birdsong15.

That sounds amazing. Like you really turned a corner. it made me smile just reading it. So positive and hopeful.

I'm sorry you've not had the professional help and had to do it alone but you seem to have managed it brilliantly.

My endo is on the NHS which makes him doubly miraculous.

Thank you so much for replying. I feel really hopeful now😊😊

[Heloise in reply to Hidden]

Birdsong, is this along with T4 or just T3? I feel some people cannot handle Levo at all.

[Hidden in reply to Heloise]

Well initally it was 100mcg levo and 20 of t3 I am now on 50mcg levo and 30 t3 and I feel better, did not want to switch over fully as i am feeling ok at this dose.

Now I need get off the sugar and gluten as I have not lost a single pound, I find my self coughing up in the mornings every morning, I cannot work out if it is milk or gluten my stomach churns away all day.

At first I thought is was the t3.

I seem to have little strength when it comes to gluten. So trying to start again this week. I have cereal in the mornings to stave off snacking a gf buckwheat with rice krispies to help with the awful taste.

Any gf ers out there will ideas to help someone starting out would be cool.

[Heloise in reply to Hidden]

Coconut oil first thing would be good. I put a couple of teaspoons in a hot drink. Could you have a boiled egg instead of cereal? Usually milk will cause the churning stomach. I don't think gluten does that.

[SilverAvocado]

I have always felt an improvement within days from any increase in dose, either T3 or T4.

[Hidden]

I was taking 150mcg of levo but never felt well. My endo precibed 100 levo and 20 lith

I have droped my levo down to 50 now and my t3 is 30 -40 depending on how busy my day is. I feel much better. More often it is 30 per day.

[Hidden in reply to Hidden]

Birdsong, would you say that there has been a dramatic improvement since lowering your levothyroxine and raising your T3?

What I mean really is.... Are you now leading a relatively normal life?

Isn't it weird that levothyroxine has such an awful effect on so many people.

[Hidden in reply to Hidden]

I am much better however it does come with specific issues such as if you are wander off your times or miss a dose you know about it pretty quickly. I am not the best either at remembering medications however all in all I am I guess much better, I have been up since 6 am something I would not have achieved previously and will stay awake all day till i go to bed at 10 pm something else that was new to me.

I must say though I did try with levo for over two year before I went to an endo privately to discuss the move to t3. I have only recently up'd it more. I would not come of the levo completely as it is good to have a cushion if your body needs it.

[faith63]

If you pituitary is off, you need stim tests..adrenal stim tests, glucogen stim tests, to determine actual hormone levels. Have you had these done? Am going thru that now and have spoken to a Pituiatry Specialist a Nueroendocrinologist in Boston..a pituitary center. I think the bottom line, the reason for your symptoms is abnormal hormones from the pituiatry. If your cortisol is too low, you will not react normally to thyroid meds either.

[faith63]

Also, with slow conversion, you should check a reverse t3 level. A higher rt3 means that the dose of t4 you are on now, is too high..this will cause all t3 you take not to work. Also, non conversion of t4 causes t4 toxicity. May want to look up symptms of that. I believe they are hyper symptoms.

[faith63]

Poor conversion is often the bodies way of protecting itself. If you don't have adequate cortisol to allow you to safely handle your thyroid meds, you will not convert well. Trying to bypass this with more t3 is not a good idea. I have tried it myself and have an abnormal pituitary mri.

[Hidden in reply to faith63]

sorry for the delay in response but I've only just managed to respond.

I have had a stim test done. My results were ok. Also all pituitary hormones. My pituitary imaging scan showed an area of hyperplasia consistent with long standing hypothyroidism ( to quote the report) and slight thickening of the pituitary stem. No adenoma.

I have had 2 pituitary scans in total over the last 3 years.

My endo was happy with the stim test and all other blood results. He does not know why my ability to convert levothyroxine is so painfully slow but does not want to pursue that route any longer because the side effects are awful. He says he is very hopeful about the T3 route.

My endo is NHS and seems to be very open minded but the T3 route is very unexpected for me. It's just taking me a little time to get my head round it.

I regained full health on ERFA thyroid a few years ago before the manufacturing changed but was unable to tolerate other NDT's.

[faith63 in reply to Hidden]

Thanks for responding...at least you know that we are concerned!

Glad you had the stim test done.

Since you were able to retore your health at one time, you should be able to do it again. T3 is promnising, in that , ndt is t4 and t3. If it doesn't work, you could do t3 only, but i doubt you would find a doctor to allow it.