In a quandary and need help please.

[Joant24]

I saw Dr on 3rd August and she said my results were perfect, I was feeling much better having switched to synthetic T3. These were my results whilst taking 50mcg Levo and 15mcg T3 :

TSH. - 0.005 (0.27-4.2) 26 July

T3. - 6.2 (3.1-6.8)

T4. - 14.2. [12-22)

Last week I felt absolutely terrible, I felt really shaky and spaced out, my heart rate was fine (Fitbit), exhausted but not able to get to sleep easily. One day after previous days walk just over 10,000 paces which is not unusual I couldn’t walk properly, my legs were so stiff and aching . I felt generally awful the worst feeling being shaky inside. This shaky feeling was much like I’d felt when my T3 went over range. So I thought the same had happened and didn’t take my lunchtime T3 as it always felt worse for a while after my regular doses. I felt slightly better having cut it out. Before I made any adjustments I did another test:

TSH - 0.005 (0.27-4.2) 24 August

T3 - 5.7 (3.1-6.8)

T4 - 13.3 (12-22)

Today I feel shaky, tired, cannot concentrate, spaced out and grumpy even with the lower dose. I’ve been up and down since taking T3 and wondering if it’s the best thing or not for me. This is the worst I’ve felt since before and since taking thyroid medication which is at this grumpy moment in time soul destroying.

Now I don’t know what do do next, should I reinstate my lunchtime T3 which I know hasn’t caused over medication and see what happens or leave it and up my thyroxine? Does it matter if T4 is low when taking T3? I am thinking my T3 at 5.7 isn’t too high in the grand scheme of things and not surprised it dropped a little as I changed to Thyborg Henning which I cut into quarters and there’s always a small loss, although it’s going to drop even more now I’m missing the middle dose. . I’m rambling here as I’m completely at a loss as to what to do now. My husband pops his Teva 75 mcgs of a night and seems to be hunky dory it’s very annoying, bless his patience with me. Anyone got any ideas? I would add my Dr is on holiday so can’t check in with her.

Thanks in anticipation and appreciation

🥰😭🥰

[SlowDragon Ambassador]

Many people on small doses of T3 need Ft4 at least 60-70% through range

Would suggest you increase levothyroxine to 75mcg

Retest in 6-8 weeks

How much levothyroxine were you taking before T3 was added

Which brand of levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

When were vitamin D, folate, ferritin and B12 last tested

What vitamin supplements are you taking

I changed to Thyborg Henning which I cut into quarters and there’s always a small loss, although it’s going to drop even more now I’m missing the middle dose

Mop up any crumbs with damp finger

I wouldn’t change your dose of T3

Only ever change one thing at a time

[Joant24 in reply to SlowDragon]

Thanks for replying. I was on just Armour before but wasn’t coping well so moved over to 50mcg of Accord (always the same make) and 15mcg of expensive T3 sorry can’t remember the make. Went over to Thyborg Henning about a month ago as it’s so much cheaper. I saved £130 a month if not more! My T4 had risen but has fallen over the months

Should I start back on the 3 doses of TH and in a few days add extra thyroxine or just go for it? I’ve missed two days of the mid day dose.

Also is 15 mcg of T3 quite low then?

My vitamins were tested in July and I’m working on getting them back up. Taking 4000 Vit D with Vit K and using Iron patches which are proving quite good. Bought some B vits too but wasn’t feeling well enough to bother. It’s all been a bit much to be honest.

[SlowDragon Ambassador in reply to Joant24]

Start back on 3 doses T3

After few days increase levothyroxine

Which brand is 50mcg levothyroxine?

[Joant24 in reply to SlowDragon]

Wont this also raise my T3 ?

[Hidden]

shaky, tired, cannot concentrate, spaced out and grumpy

I’ve been up and down since taking T3

feeling being shaky inside

 Joant24 have you ever tested your cortisol? These symptoms are very similar to how I used to feel whenever I tried to introduce T3 to my T4 before I was on adrenal support.

"If, upon starting NDT [or T3], you experience symptoms, including anxiety, insomnia, shakiness, sweating, dizziness, feeling spaced out it's a strong sign that you may need adrenal support." - from the TPauk website

Sorry you’re having a rough time

[Joant24 in reply to Hidden]

Thank you. I could have written that myself! I had my cortisol tested when I first saw dr. That was over a year ago and she had results. I never actually saw them but said they were fine. Maybe I need to recheck them myself. Any recommendations where I could do this?

[Hidden in reply to Joant24]

I have a long bio that outlines a lot of information re. Cortisol that I’ve gathered from different sources, it might be useful for you to give it a read.

Generally Regenerus cortisol saliva is suggested to gauge cortisol’s daily rhythm. 9am cortisol blood test would also be helpful.

Sadly doctor’s knowledge of adrenals is even worse than thyroid ☹️ so even if they tell you your results are OK, it is best to get clued up yourself and learn how to assess your results and symptoms.

Hope that’s helpful x

[Joant24 in reply to Hidden]

I’ll have a read now. Also will order a test asap. I didn’t have these symptoms pre medication and my last test was done before hitting the pills so maybe another test is needed.

Thanks for info.

[Hidden in reply to Joant24]

Yes, if T3 is sparking these symptoms it is possible that low cortisol is at the root.

A possible explanation is that the thyroid hormone is causing cortisol to be cleared faster, so if you are already not making enough you’ll be clearing what little you’re making even quicker. This ultimately results in higher adrenaline, hence the symptoms of feeling spaced out, shakey, can’t concentrate etc. it’s like you’re being pushed into fight or flight. On T4 the tendency for this to happen is less severe because your system gets to choose how much it converts, direct T3 can really highlight a low cortisol issue with real aggression!

If I were you, in the meantime I would slowly reduce my T3 because it is not advisable to be putting potent thyroid hormones into a low cortisol environment.

It’s a horrible feeling. I hope you get it checked soon 🙏

[Joant24 in reply to Hidden]

Sending for test as we text. I was going to go back to T3 x3 +T4 but not sure now. I feel terrible.

[Hidden in reply to Joant24]

I can’t give you direct medical advice, ofc, but when it happened to me the sooner the T3 drained out of me when I wasn’t on adrenal support, the better I felt. It felt like poison. If it were me, I’d be weaning off it slowly and getting adrenals checked out. They are the gatekeepers for so many thyroid toleration issues. I personally think it is far more common than we realise, so don’t worry - you’re not alone and there is a solution in the short term, it sounds like you’d definitely be better reducing it, but go slowly.

[Joant24 in reply to Hidden]

There are quite a choice of tests at Regenerus. Which would you suggest please and thank you. 🥰

[Hidden in reply to Joant24]

regeneruslabs.com/products/...

It is more expensive than the Medichecks one but Medichecks is not reliable in my experience.

[Joant24 in reply to Hidden]

Thanks so much. I think this was the lab that did my previous test so I can compare before and after medication.

[Hollybushroad in reply to Joant24]

I've had a similar experience to DFC with introducing T3 about 4 weeks ago. I started low and slow but on only 5mcg X2 doses I felt really unwell.My adrenaline went through the roof and was so shaky and tremulous. Couldn't eat. Lost 7Lbs in 8 days. I stopped it over a 4 day period and have to say I feel better for stopping it.

As DFC suggested I think I also need to get my adrenals in order first as my body obviously can't cope with T3 due to my very low Cortisol. I'm not sure how I'm gonna sort that out mind you as I've read so much conflicting info on how to treat advanced stage 3 adrenal dysfunction. Dr Lam advises against glandulars in stage 3.

I've ordered Isabella wentz adrenal protocol book which claims success after 4 weeks(sounds too good to be true) but will give it a go.

I really hope I can reintroduce T3 when my adrenals are in better shape. Hopefully you will have a good outcome 😁

[Kowbie in reply to Hidden]

Hello hope you don’t mind me asking,but you’ve said medichecks aren’t reliable,would you mind telling me why please , hope you don’t mind me asking thank you

Oh just started to read below is it just adrenal s

[Hidden in reply to Kowbie]

Yes  Kowbie it’s just adrenals. I have adrenal insufficiency and am managed by an NHS endo. Before that diagnosis was found via synacthen I did 3 cortisol saliva panels with medichecks and they all came back healthy 🤨

[Kowbie in reply to Hidden]

Oh ok thankyou

[Hollybushroad in reply to Joant24]

I would advise you NOT to do the medichecks Cortisol saliva test or their 9am blood cortisol. They are inaccurate. My symptoms were in keeping with low all day cortisol but my medichecks saliva test suggested my levels were high in morning ( that defo set alarm bells) and evening which I could not believe.I done a Regenerus Cortisol saliva test the following week and it came back that I had extremely low Cortisol at all 4 times of the day which is definitely more consistent with my symptoms. I have established phase 3 HPA axis dysfunction.

[Beau55 in reply to Joant24]

Hi Joant, you probably don’t remember me but I recommended the doctor to you that you are now seeing. She’s great thyroid wise but dreadful when it comes to adrenals unfortunately I have now learnt. It really sounds like low cortisol to me but she will just tell you to take thyroid meds until it mends itself, which can feel deathly and also not the safest method or proven to actually work in most cases. I still see her for my t3 but ended up having to take hydrocortisone through another doctor.

If you ring the secretary you can ask for a copy of your cortisol results to get you started. I had the same symptoms as you during raises and was at a complete loss x

[FoggyThinker in reply to Beau55]

Yes, same Dr I believe and same experience, I will be forever grateful for her diagnosis and prescribing NDT but am sorting my low cortisol myself. Seems like finding a good thyroid Dr is hard, finding someone to help with adrenals is even harder! Joant24 I think your plan to check Cortisol is a good one, Hidden has some great info and Dr Peatfield's book and the revised STTM books were also really helpful for me.

[Hidden]

It could be that your FT3 level is a little too high for you. Some of us don’t do well when too near top of range.

I hope your testing protocol is testing 8 - 10 hours after meds and definitely no more than 12 hours. If it’s any more than 12 hours what we’re seeing here is actually a ‘false low’ and your FT3 would be even higher than you think.

[Joant24 in reply to Hidden]

Thanks for replying. I did test according to protocols so I don’t think that’s the problem. I’m going to test my cortisol as a first step and go from there. I feel the list of symptoms could have been written for me,

[Hidden in reply to Joant24]

😉

[terebol in reply to Hidden]

I have Ord's & nice to see it written that everyone does not do well when near top of range. I was on Naturethroid and felt fantastic w/FT4&FT3 just a bit under mid-range (.82-1.77 FT4)(2.0-4.4FT3) & now on NP & feel fine w/recent labs of May: FT4-1.03 & FT3 2.8 I have boosted my B12 & D3 levels Been on NP 1 year. Could not tolerate/find best dose w/the synthetics. Am I the odd person out who does well on such low levels???

[Hidden in reply to terebol]

No, I believe radd says she also feels better with T3 lower in the range than average members.

I wouldn’t fret about where you are in the range, symptoms, signs and other metabolic indicators (liver enzymes, cholesterol, kidney filtration etc.) matter a great deal more. Leave the gormless GPs to fret about ranges 🙂

[terebol in reply to Hidden]

HaHa regarding the GPs! I have to say that I do have a very good endo - GP was not comfortable treating my thyroid disorder and I appreciate she was up front about that

[Hidden in reply to terebol]

I think there are more of us than you think. We’re often so overjoyed at getting access to the correct thyroid meds that there’s a tendency to think we need higher doses than we actually do.

Sometimes, less is more 😉

[terebol in reply to Hidden]

That is good to hear as when I started my research back in 2013, it was Mary Shomon w/ STTM who had such good info. As time went on & she left STTM all I read was you need to be in such & such a range. Then, a fellow member of this site sent me a PM via STTM & I've been following since.

[Hidden in reply to terebol]

Mary Shomon is an excellent source of advice and has a real understanding of Thyroid issues. I still follow her on her website and it’s from there, and this forum, that I get all the information I need.

She left STTM after a disagreement with the insufferable Janie Bowman whose advice on STTM is at best dubious and at worst unhelpful and inaccurate. JB has no insight into thyroid health and treatment. She relies on what she calls ‘patient experience’ for her advice and that forms the basis of the blogs which she writes. They certainly have no scientific basis.

I see that there is currently an ‘open letter’ to Mary on STTM in which JB has asked her if they can work collaboratively for the benefit of thyroid patients. Mary has sent a courteous ‘open reply’ but the sub text conveys her views on the current status of STTM.

[terebol in reply to Hidden]

I agree, Mary Shomon is an excellent source. I knew the 2 of them had a falling out over ideology, but unaware of JB soliciting MS for collaborating. thanks!

[Hidden in reply to terebol]

Yes. Her ‘open’ letter was cringeworthy 🤨

[terebol in reply to Hidden]

I had been on STTM prior to making my original post; went back after reading your response, but was unable to fine the "open letter." Where on the site did you read it? thanks

[terebol in reply to Hidden]

Ah, just found it!

[Hidden in reply to terebol]

👍

[Beau55 in reply to Hidden]

Hidden I’m interested to know which bits you find dubious.?

I have found that she has a good working knowledge on most treatments and is actually very well which says a lot. I don’t think you can diss her for using patient experience as her evidence as that is what drives this forum.

[Hidden in reply to Beau55]

I don’t agree with many things she says. I also think that using patient experience without medical/scientific back up isn’t always a good idea. Patient experience does indeed drive this forum, but links to assertions and alleged evidence are always sought. I’m certainly not ‘dissing’ her personally though many do.

I choose not to use STTM as a source of reference or information. Some of our own admin have a similar view of STTM and Mary Shomon certainly does.

I’m glad that you find STTM a good source of information.

To each his/her own 😉

[Hidden in reply to Beau55]

I’m with you Beau55 I’d still be pushing myself through toxic, god awful slow and steady raises of NDT if it weren’t for STTM. Their cortisol awareness is 👌

It is funny that no one can ever really give specifics on what they don’t like about STTM… I asked the other day and I just got things like “typos on the website” and “condescending tone.” I feel like I owe my thyroid medication tolerance to STTM!

[Hidden in reply to Hidden]

I replied to you. I certainly didn’t mention typos. As I recall you accepted my view but qualified it with one or two points re how you’d found them helpful.

I repeat:

Each to his/her own 😊

[Hidden in reply to Hidden]

No it wasn’t you who said typos. Yes I agree, each to their own… absolutely.

I just think we need to be wary of putting other members off unless we have substantiated reasons. I avoided STTM because I listened to hearsay and it really didn’t serve me to avoid them. I am a really grateful to them and Barry P’s book for being emphatic about cortisol. But yes, I wholeheartedly agree - each to their own.

[Hidden in reply to Hidden]

Can you link me to the post where I mentioned ‘typos’ please?

I think I have temporary amnesia.

I think we all have the right to express opinions and it is up to others to decide whether or not they wish to agree. I never listen to ‘hearsay”. I make up my own mind

We have an admin who has expressed very overt views about STTM. I agree with those views but I don’t think that’s stopped anyone from using that site when they’ve thought it was helpful.

Paul Robinson has a ‘following’ too but there are also those who disagree with some of his views.

We can’t ‘mollycoddle’ members. They will use whatever information they feel comfortable with. Good luck to them.

Edit: Sorry. You said it wasn’t me who mentioned ‘typos’. I misread your post. Glad some of my brain cells are still working 😉

[Hidden in reply to Hidden]

Everywhere2, I would hate to make anyone feel they cannot express their view - I personally am almost a free speech absolutist! So I apologize if I have given the impression I don’t think people should share their views, that’s definitely not the case.

But I do equally think that if we are going to level criticism at someone/something we need to be able to substantiate it beyond things like not liking their tone or finding typos.

[Hidden in reply to Hidden]

Sometimes explicitly substantiating what we believe to be inaccurate or unhelpful isn’t a good thing to do on a forum. It leads to combative exchanges which are not helpful and constitute poor forum etiquette.

The issue is whether we should allow people to make up their own minds. I think that you and I share some common ground here. 😉