I'm ready to get absolutely wiped out here but... I read Dr Peatfield's book.
I was prescribed an initial starting dose of 10mcg T3 with a reduction of Levo from 300mcg to 200 in July & had an initial improvement for 3 weeks which unfortunately over the next 2 months diminished back to almost baseline. I went back to the book, re-read it, & bought Pregnenolone, Adrenavive 1 and Metavive 1 from Dr Myhills site. I now feel good. Not 100% yet, but better even than I did for the 3 weeks the T3 dose was effective. And I read all the clinical reviews that said it was all just mumbo-jumbo rubbish.
My Cons (who I saw privately but is now my NHS Cons) has increased my T3 on my latest blood results (TSH - 3.13 (0.4-4.5), T4 - 7.6 (9-25), T3 specifically requested but not done, & TPOAb - 131.2 (0-33)) and says the results are still 'suboptimal' and he would like my TSH to be below 2.5 at least. I'm pinning my hopes on the 'at least' meaning that he's maybe as well informed as you good people but I wont hold my breath. I'm now supposed to be on 150mcg Levo & 20mcg T3 daily but the surgery hasn't got his email yet. He wants my bloods checked in Dec and apparently will get a form to me somehow so that the hospital do actually check my T3.
My question is not about the blood results at all as I've been reading this site compulsively over the last few months, but I would like to know if anyone else has had any experience with taking these 'supplements' and whether any of you have any advice for me? I know clinically it's potentially interfering with the blood results but I've just felt so much better these last few weeks in all areas of my life. I've even been out at dawn walking the dogs which would have been just impossible a few months ago, but now I do that then go and do a full days work, a bit of social time and THEN get a good nights sleep. I've got no shakes or jitters, nothing that could be called adverse effects - I read about poor skin, headaches, nausea, aggression etc. but nothing at all.
Can anybody tell me whether this is a really dumb idea? Or not?
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Ozziemum
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Dr P worked in a different way to how the NHS does. If you were self medicating his methods might work. I say might, because his methods didn't work for me, and I did see him in person.
As you say the supplements are likely to interfere with your blood results and that's a really important point if you're dealing with an NHS Endo who seems to be being guided by your TSH which isn't the way Dr P worked at all. If you're optimally treated with T3 then your TSH should be suppressed. Seems your Endo doesn't understand this though so you might struggle getting optimally treated by him.
The way people here get well is to optimise their key vitamin levels and thyroid treatment getting FT3 into the upper part of it's range as well as balancing the FT4. I don't see anywhere you have reported your vitamin levels?
Hi Jaydee, thanks for replying. I think I was just too desperate after the improvement and then back-slide to do pretty much anything that would help me feel better again so I've not had anything tested recently. Years ago I was having B12 injections for 'low to indeterminate' levels, but I never felt any different on them and then the surgery said that's all fine now, off you go... Way before I knew anything about this site unfortunately. My current plan is to get the blood form from the cons and have a full panel done from the companies here at the same time so that I can use those results to inform further actions. I did ask the Cons whether he would accept 'private' blood results but got no reply, so I know it would be for my use only.
I just wanted to see if anyone thinks I'm being extremely silly by self-medicating with stuff that's not actually 'medication', or whether it's an 'ok if it works for you' kind of thing?!
An improvement and then backslide just means you haven't reached your optimal dose. It's pretty normal and to be expected really. Maybe when you add the next increment of T3 you won't feel you need the other supplements? You may, actually almost certainly are suffering the effects of low vitamin levels so that will be contributing to feeling rubbish, low energy as well.
If you were getting B12 injections at one point then do not start any B12 supplements until you've had that checked out thoroughly. It takes 4 months of no supplements to get accurate bloods for B12. You may not have benefitted from them due to low cofactors such as D3, ferritin and magnesium. These low vit levels will also stop you getting the best out of your thyroid replacement. Doctors can be really bad at dealing with B12 deficiency so I would encourage you to follow that up immediately. Get the vit levels done ASAP.
If it were me, and with the knowledge and experience that I have now, I wouldn't recommend the supplements you are currently taking as, as far as possible you need to work with your Endo. Better to go down the supplementing low vit levels.
Did GP test you for 'Pernicious Anaemia' because if we have one autoimmune disease we can develop others. I have P.A. and so did my mother. I also have other autoimmune diseases. I have monthly B12 injections and the usual is every quarter.
My mother's GP told her she no longer needed B12 injections as her 'bloods were now fine'. Both my sister and I thought that was 'good'.
Unfortunately the GP knew little as that decision caused my mother to develop Cancer in her stomach and she died.
Thank for that Jaydee - I was taking a high strength multi-B previously but noticed the skin my palms started peeling off, nowhere else, quite strange really! But also I never felt any different on it so I'm now only taking the above 3 plus the AdCal D3 I was prescribed when I was first started on levo 12 years ago, and fish oil. Oh, and Sage for my menopausal hot flushes which works an absolute treat! So actually now would be the best time to get everything tested properly when I have a blank slate rather than waiting until December. Thanks for the advice, I'll see what the results throw up 😊
No, i just added them in 🤷♀️ Which is why I thought I'd ask folks who know better than me their opinion! Hopefully, Like Jaydee1507 says, when I'm on the right doses I wouldn't need anything else.🙂
Got ya. Your nutrient levels play a big role and getting them optimized will greatly help your thyroid and overall health.
Hopefully others will chime in but too much t4 is being dropped. They should have left you on 200mcg since your t4 is low and just increased your t3 to 20.
I think you were feeling the effects of the glandulars and that's why you were feeling better. For the last few weeks I've added a beef thyroid glandular to my ndt and t4 dosage and have felt its effects. So no mumbo jumbo....lol.so to speak.
Plus there is a member on here thats on metavive thyroid glandular and is doing well on them.
Thank you for that Imaaan. I really do feel it's made a big difference to me although I can see that perhaps mixing 'science' and 'mumbo jumbo' is not quite the done thing! 😬 I did wonder why he dropped the T4 when it's quite a way below range already, but I dare say we shall see. I was referred to the NHS Cons back in Aug and have had a letter saying there just are no appointments available so the only way I'm getting anything done was when I saw him privately in Feb he said I should get my GP to refer me and until I got the NHS appt to keep him updated and he would sort it all out by email on my blood results. Which is good, at least I'm getting somewhere, and I know he's very busy but it sometimes takes him 6 weeks to answer his emails which is why I got frustrated and bought things!
Mixing them all together will be difficult to figure out what you're truly benefitting from .That said, I understand what drove you to try the glandulars.
In regards to why they dropped it, my assumption is they thought they were giving the equivalent amount of replacement. 5 t3 would approximately be around 15-25 mcg of t4 but I dont think they are aware of that.
in your first post 3 months ago we asked what were your thyroid results BEFORE adding T3 and reducing levothyroxine
Reducing dose levothyroxine by 100mcg and only replacing it with 10mcg T3 was always going to be far too big a change
Typically dose levothyroxine is reduced by 25mcg or 50mcg maximum……but amount dose levothyroxine is reduced would depend on how high Ft4 result was on 300mcg dose levothyroxine
So now having reduced levothyroxine by 100mcg your results, unsurprisingly show Ft4 is too low and below range so dose needs increasing
Dose levothyroxine should usually only be increased slowly upwards in 25mcg steps
Increasing by 50mcg is possibly too much in one go
Which brand of levothyroxine are you currently taking
Do you always get same brand levothyroxine at each prescription
Similarly generally advise is to only increase levothyroxine or T3 not both at same time
Only increase T3 by 5mcg at any one time
Are you currently taking 10mcg as 2 x 5mcg doses approx 10-12 hours apart
Adding 3rd 5mcg dose T3 and change dose interval to approx 8 hours between doses
ESSENTIAL to test vitamin D, folate, ferritin and B12
When were these last tested
What vitamin supplements are you currently taking
As you have autoimmune thyroid disease also called Hashimoto’s, diagnosed by high thyroid antibodies…..have you had coeliac blood test done
If not that needs doing BEFORE considering trial on strictly gluten free diet
Approx 80% of Hashimoto’s patients find strictly gluten free diet is beneficial or essential (only 5% test positive for coeliac)
before I got the T3 my TSH was 5.26 (0.4-4.5), FT4 was 10.5 (9-25) and TPO 113.3 - which has now gone up for some reason. They did also do gastric parietal cell antibodies which were 0.2 (<8) but Cons said he's not sure about this because I have very strange and VERY random food intolerances so he wants to check 'something else' before he 'decides what to do' re gluten etc. My intolerances are very strange - I can eat bread with no problems usually, occasionally some minor bloating at most, but one day I can eat salmon with no problems, the next time I'm rushing to the toilet within 20 mins. I had a nectarine (which I loved & ate frequently) that closed my throat up & made breathing interesting for a while, peas grown myself and straight from the pod the same. Peanuts are another thing I snack on but was on the toilet before I'd even finished chewing one mouthful! Rhubarb induced a 3 week bout of septic arthritis once, but I've eaten it for years. So strange. Mushrooms are really dodgy. they're probably my favourite thing but I'll only eat them at home because I never know how I'll react to them. Is this a 'thing' or am I slightly odd? I think I need to stick to chicken, occasional beef, oxo cubes and milk! 🤷♀️ I can eat spicy food though
I currently have the Teva Levo, but over the years I've had every brand going. I've also had 3 different brands of T3 since July but didn't notice any difference in them, although maybe that's because I don't have enough in my system yet for me to notice if it's not so good?
The only vitamins I currently take are the Adcal D3 the GP gave me because either the Levo or being hypothyroid can thin your bones, I'm not sure he was sure which, and fish oil, but I am now going to get everything tested and take it from there. Many many years ago I had B12 injections but after a while apparently that was all 'fine' and I could just go about my business.
What would you suggest re gluten? I'm probably not going to get a physical appointment until next summer and the 'something else' he was going to check hasn't happened since March so I'm just a bit up in the air and left to my own devices really. I do take Naproxen 500mg twice a day along with other meds for my back and because of that was given Lansoprazole as a stomach protector but I've been trying not to take that due to it reducing stomach acid etc etc... I'm stuck in a minefield!
Well thanks Jaydee, I think. Probably every single one of my favourite foods are on the avoid list there! Marmite! Who knew?! I'll have a good look at that and see where I can get to. Unfortunately it sounds like it might be necessary, so I'll do some googling. Thanks for the link 😊
My grandmother, the dairy farmer, would have had serious words with me when I tried dairy free. It was such a rubbish time, I love milk and milk products. I didn't notice any improvement with any of the things I cut out, diary, coffee, pepper, gluten. Just a miserable life. I soon stopped that nonsense. So approach it with skepticism if you try it. I believe we are too keen to rush into weird ways of eating when we don't feel well. Food is one thing we can control when sick and it can become an obsession.
This is not the standard view on here, but it's my view and I urge you to be careful of cutting out the things that make life tolerable unless you find real benefits to it. Don't do it all at once. Remove one thing at a time and give it a few months to see. Oat milk in tea - yuck! Soy milk was about the best alternative but I don't want to drink a lot of soy.
Other members have replied re histamine intoletance and as a sufferer myself (Hashi's and histamines) I just wanted to add re your salmon reaction, that fish can really cause problems for some of us. General advice seems to be to eat either freshly caught or fast frozen at sea so after quite a lot of research, I found a great frozen fish supplier who now has a special logo on their products to show which are histamine friendly. Company is Seafresh and they deliver frozen fish packed in dry ice. Great customer service too - will even provide detail re where provenance of the fish if you email them. Hope it helps Ozziemum if you decide to try and cut down on histamines.
If you are taking T3 then it seem very remiss of your endo not to test FT3....in fact not to test T3 at any point is to miss a significant marker.
He is dosing by TSH which, as science underlines, is the route to problems
TSH is a pituitary, not a thyroid hormone. It was initially devised to diagnose hypothyroidsm....nothing more. It has now been tweaked to supposedly identify a need for dose change.....it can instead lead us up a blind alley!
TSH reflects the overall level of hormone in the blood....generally high hormone is indicated by low TSH and vice versa. However, it clearly does not show the level of each individual hormone and that is important.
For good thyroid function it is essential that the following are optimal.... Vit D, vit B12, folate and ferritin.. Has this been achieved?
Not 100% yet, but better even than I did for the 3 weeks the T3 dose was effective
if by "effective" you mean you were taking T3 for just 3 weeks then you misunderstand thyroid hormones.
They take at least 6 weeks to settle into the system....often longer....so 3 weeks is too soon to draw a conclusion. Taking thyroid hormones is not like taking paracetamol for quick cure for a headache
What exactly do you mean by " supplements"...do you mean the Adrenavive and Metavive....these are glandulars and do not specify the amount of hormone content....unlike NDT.
I think you need to start at the beginning again because your body is possibly in a state of confusion after all the changes it has had to cope with.
Do not take any other "supplements" right now ( as mentioned above) they contain unspecified amounts of hormone and if added along with your prescribed hormone dose will not only interfere with test results they may cause you to be overdosed.
They may help some pople but seem to be confusing the issue for you
You need to find your optimal dose and that is not the way to go about it.
I suggest you take the advised dose of 150mcg Levo & 20mcg T3 daily for absolutely no less than 6 weeks then do a FULL thyroid test. The resultant labs will point the way forward.
That is quite a large dose but in the meantime settle on that stable dose as your endo advises and stick to it
I fully understand how desperate you might feel to improve things....it's horrible...been there a number of years ago. Long story (in my bio) but I now self medicate with T3-only which my medics know about. so I've done the hard yards on that one!
There is no quick fix for thyroid disease...so be patient. I'm afraid you are not doing yourself any favours by trying to self medicate without being absolutely sure of what you are doing....and I'm very sorry but I don't think you are
You are not "extremely silly" just desperate to feel better and you are now beginning to see the way forward more clearly....
My current plan is to get the blood form from the cons and have a full panel done from the companies here at the same time so that I can use those results to inform further actions. I did ask the Cons whether he would accept 'private' blood results but got no reply, so I know it would be for my use only.
Post any results you do receive.....essentially after 6 weeks on a stable dose....and members will then see what is going on and can offer more help if you wish
GP did request T3 on the form along with 'on T4/T3' but the lab ignored it, possibly because it was a GP request. I didn't stop taking the T3, just that I was going really well for 3 weeks and then I wasn't, there was a noticeable return to how i was before I started the T3 and after a couple of months of this I was getting fed up because you get a small reminder of what life was like before Hashi's and I'm just getting too old to mess about any more. I did call the Metavive & Adrenavive 'supplements'; I know they are glandulars and not regulated so not guaranteed but yes, I was desperate to try anything. It's taken so long to get to this point, with so many knock-backs and Drs treating me like an inconvenience because I wasn't getting any better like they just thought I should so I could be got rid of...
I'm going to get the full bloods done with vitamins/minerals and take it from there. Thanks for your advice. Maybe slightly ranty, but very helpful all the same 😉😄
Ozziemum we need to rant about T3....it is far too often misunderstood and disregarded.
Thyroid testing is a complete mess! Make sure you have a Full Thyroid Test
After 3 improved weeks on T3 your body then signalled it still wasn't enough by returning your symptoms. This is normal but is often not understood....so patients ( medics even) think it isn't working
T3 must reach the nuclei of the cells, from the blood, via T3 receptors to become active,
For good health every cell in the body needs a constant and adequate supply of T3
Treatment difficulties are usually caused by the diverse effects of T3 deficiency... no cell type or organ system is left uninfluenced by the effects thyroid hormone....
T3 deficiency can cause all manner of ailments....over years
It took me nearly 50 years to discover this...that is why I rant and try to alert others to the importance of cellular T3
Well that's a very interesting website, Thanks DippyDame!
From the time of being diagnosed it only took them 2 years to decide I needed T3, and for the 10 years since then, despite it being in my notes, several other consultants have dismissed me at best and made me feel a thousand times worse on other occasions. It's like if you know to ask for anything at all they get stroppy because they think you're trying to tell them their job. Or maybe it's because they know they should know more but they don't so they feel bad and they don't like that so take it out on the patient. Or maybe they don't know more and just think that they're right and you're some jumped-up little nobody who should know their place!
You are right, it's infuriating and does need shouting about.
I do even wonder if I'd seen this Cons on the NHS first whether he would have given me T3, or if it's just because I saw him privately. He seemed like a very nice man, but then he says he'd prefer my TSH 'under 2.5' and doesn't mention the lack of a T3 result or the very low T4 (and reduces the T4 even more!) Previously I would have cried about it and sunk further down into the 'I don't know why I bother, nobody cares anyway' self-pity party but now I have improved a bit I'm just getting a bit assertive. About time, I know.
Thank you for the extra info. I've got a lot more reading to do 😊
Oooo that was restaurant fish, not my cooking which I've never had a problem with, so I don't know, but I'd bet that may have had something to do with it! Thank you, I'll look into low histamine diet 😊
HI Ozziemum, have you ever been tested for adrenal insufficiency or particularly for Addison's disease? Addison's is an autoimmune condition and is one of the conditions that can be seen alongside autoimmune t. I see you have been taking Adrenavive so potentially your feeling of improvement may be partially related to your adrenals being supported. However, if you do have Addison's disease you should be properly treated for this alongside anything that may continue to be needed for your thyroid. I believe the endo would not be able to properly test your adrenal function unless you had stopped adrenavive.
Pregnenolone has been reported to improve mood, anxiety in some people with "psychiatric" diagnoses. I assume Dr Peatfield (who I also saw) recommends it if you are low on hormones in general - I can't remember the details. The Metavive- just more thyroid hormones. The Adrenavive - adrenal support. So at the moment throwing in these has worked for you - is it the mix or more one part of this - I guess you can experiment. Maybe with this private-now-NHS consultant you know fairly well you can "come clean" and ask for ideas going forwrds?
Dr P was a wonderful and kind doctor and it was a pity he had to withdraw his licence due to the fact that he was being pursued for prescribing patients with other than levothyroxine.
hi there, just wondered if Dr Peatfiled is still around now, it's been several years since I spoke to him. He also saved my sanity as I didn't know what was wrong when I saw him. A wonderful help for me then.
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Thyroid S problems
Confused!
Some T3 questions
More T3 + T4 blood results and even more confused
