Progress! Endo on board! What’s working and THANK YOU

[Blue_Bee]

Saw my endo again today, earlier than planned ‘cos I needed a second script for NDT and wanted to check in on the 60mcg of T3 that I’ve continued to take along with the 2grains of NDT, which he started me on 4 weeks ago. I was meant to taper off my 80mcg of straight T3, and just take the 2grains of NDT, but found I began to go backwards on anything less than 60mcg T3. All the talk here is turning me into a radical patient learning to trust my own symptoms! Still, I thought marsaday would have a fit about the 60mcg T3 ON TOP OF the 20g T3 in the AU compounded NDT... I’d better double-check with my Endo...

MY ENDO IS SUPPORTIVE of my approach because I’m feeling better!! I am so delighted I had the courage to continue with what I FELT was helping, and then to have my Endo agree with and support that approach really adds hope to my beacon of optimism.

I’m a looong way from being symptom-free yet, but AT LAST I feel I might be on the right track to being well.

Progress has been uneven over the last 4 weeks, but once I wrote it all down in preparation for my appointment today, I realised the 10 day dip directly coincided with me reducing from 60 to 40mcg of T3. In desperation I increased it again. Thank heavens!

This post is not to advocate my particular meds regime. We are all so different!! It is to advocate what I’m learning here and what I think is helping me get well:

* reading reading reading all the posts, links, back-stories and articles that jump out at me from this amazing, wise and supportive community.

* taking a lead on my health. THAT has been, and continues to be, a long journey going back a few years. Joining here accelerated my sense of responsibility.

* journalling, from crying in my diary to how lonely and crazy and close to death I felt at times.. to more restrained posts here.

* high fat, low carb, gluten free (I’m Coeliac anyway) alcohol free, SDC homemade yogurt, healthy diet MOST days (definitely NOT on Friday PJs night after a full week’s work!).

* Pain and stress reduction meditations here and there, Headspace and Tara Brach recommended.

* all the good Hashimoto’s vitamins and supplements highlighted here by the Admins and Long-termers.

* At least 8 hours bedrest and sleep every night.

* Slow, at times reSENTful acceptance of the fact that Hashimoto’s is a life-Long condition. Taking total responsibility for my health is daily, forever, until I depart this beautiful globe. Still working on this...

Thank you from my healing heart to all who contribute here especially those who have gotten well and STILL contribute. I could kiss your cotton socks!! Your stories give me hope and some days with this blasted disease hope is just a tiny glimmer in a very dark space about the size of a coffin.

And you administrators, you are just amazing. I read your advice over and over again, in different contexts and that’s how it sinks into my being and eventually turns into action.

Today is a whole good 60% well day and I just want to thank you, you wonderful ones. And also to share some encouragement and hope for those who might be feeling lousy today.

Keep advocating for your own health, You are worth it!!

PS No blood tests this time. January the next lot...

In gratitude, Blue_Bee xxx

[endomad]

Great post. Yes as badly as my GP and multiple endos let me down, it was taking charge of my health that helped me. I just dont think most drs are interested and tbh have no idea, i give talks to final year med students, so i know first hand how little they have been taught and how the half day training perpetuates old thinking.

My thyroid was removed and no one told me i would need to take medication after. It was sheer desperation that led me to support groups, self medicating to begin with and now i have a good endo who monitors me. I will never again trust any one else to dictate to me about my health and well being.

I am still not totally symptom free but a million miles from the bed bound, pain wracked gibbering wreck i was after TT.

Sending you love xx

[shaws in reply to endomad]

How awful they removed your thyroid gland and left you to get on with it and no hormone replacements. It fills me with horror. What insensitivity and negligence - how many more are treated similarly.

[Blue_Bee in reply to endomad]

Thanks Endomad, and thanks for sending that love, I got it! That’s outrageous, no meds post removal. Must’ve been terrible. It’s incredible where we find the strength. You’ve done amazingly well. It’s such a shock to be let down by the medical system like that, but also liberating and empowering to take the lead on your own health. No one else will fight for you like you can. I find it a real and radical change of mindset. For a long time I felt like I was talking underwater, no one could hear me and everything was in slow-motion. A kind of waking nightmare. Today at my endo’s I looked out the window, after explaining myself fluently, and said “This is the most cognizant I have felt in this room. Ever.” A 3 syllable word FFS, I must be on the mend! Glad you’ve found a good endo now. Keep well, and keep getting better. BBxxx

[shaws]

I am glad you are feeling so much better. Is there a possibility that you are Thyroid Hormone Resistant, i.e. that your body will only accept very high doses of T3? Excerpt:

First, resistant patients recover from their hypothyroid-like symptoms and signs only with extraordinarily large dosages of T3 (called "supraphysiologic" dosages). Second, despite these large dosages—which might hospitalize a person who doesn't have tissue resistance—the patients have no indication of tissue overstimulation. (We use various objective tests to rule out overstimulation, such as serial EKGs and various biochemical tests. We also closely scrutinize patients and use various physical exam procedures such as the Achilles reflex test.) Third, although the patients have recovered from their symptoms and signs with high dosages that don't overstimulate them, lab tests show that they have extremely high blood levels of free T3.

If these patients did not have tissue resistance to thyroid hormone, the high blood levels of T3 would cause severe overstimulation (termed thyrotoxicosis). Hence, we know the patients' peripheral tissues are resistance to normal levels of thyroid hormone. Unfortunately, we don't know the mechanism of the tissue resistance. But we're determined to identify the mechanism through further studies.

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

[Blue_Bee in reply to shaws]

Wow, thanks Shaws, I am really going to enjoy reading that link, thank you. Yes, I definitely have malabsorption issues (guts... not diagnosed Coeliac until well into my 40s) and given the high dose of T3 I’m on and just beginning to feel 40-occasionally 60% well for the first time since diagnosis— like, I mean WELL IN MY BRAIN — yes, very likely not absorbing at the cellular level unless my blood is swamped with T3. Endo is looking at increasing my NDT dose too in January. I can’t wait! I asked whether I ought to get a test to see if I have the gene which means you can’t convert T4 to T3 (DIO2?). Interestingly he said he’s not aware of anyone in Australia who does that test, that I might have to send to Boston or somewhere!! Hmm, he said there’s a similar issue for cancer patients who are resistant to a treatment, and there’s a test for it, which is pretty important for the 50 or so people in Australia who are affected.

I’ll say! He then said there’s probably no point getting it now, it’s academic as I’m getting well. ...well I wish I’d known 2 years ago! In the meantime I’ve lost my career, fabulous income, new business and dropped out of a science degree. I now struggle to do a 5-day receptionist job.

Sigh... there really is just not enough research done and generally taught to medicos on the 5-20% of people who do not respond to the big pharmacist T4 “solution”. Grrr , I could go on. Well, I hereby volunteer for any research that will help unlock the mysteries we’re trying to solve for ourselves here. And in the meantime I’m going to enjoy feeling well while it lasts and keep on nurturing my health.

I’ll also search on tissue resistance, and feel free to bombard me with more information too

[shaws in reply to Blue_Bee]

It is worth getting the DI02 test then you will know for sure.

I feel there's too much research and let's get back to when they treated us as 'people' with clinical symptoms and not diagnose by a blood test alone. Don't bamboozle us with ranges etc etc. Ask the patients how well they feel and ask if their symptoms are resolving and trial different options available and not rely on unsupported evidence that we are in danger of overdosing. Simple stuff If overdosed we'd

probably reduce dose ourselves.

The following doctor was a Virologist and became involved in 'thyroid problems' inadvertently.

About ten or twelve years after the introduction of Blood Tests and Levothyroxine, people were being diagnosed with 'mysterious diseases' so they were sent along to Dr S.

He realised that these people were symptomatic with hypothyroidism and treated them and they recovered.

For so doing, Dr S was then pursued by the Endocrinology for daring to suggest that people were remaining undiagnosed/untreated/undertreated and in a Parlous Situation for many. He then was called to appear several times before the General Medical Council to be investigated but was found to be doing nothing wrong. It happened again and again that one of Dr S's supporters said that it was a 4 million to 1 chance that someone was called before the GMC for doing as they were trained/taught as medical students.

The BTA are fixated on the whereabouts of the ranges ignoring patients' complaints and doctors prescribing other medications for remaining symptoms so patient spends years in ill-health and, like you, have lost their livelihoods. It causes a lot of anger and frustration.

Before the blood tests and levothyroxine were introduced as 'perfect' we were diagnosed upon our clinical symptoms alone and given NDT, if we improved and symptoms resolved we were hypo and stayed on NDT. Obviously this had to be adjusted until we were on an optimum dose.

His staff and patients were distraught (10,000 wrote testimonials to the GMC) when he died of a stroke. However over the last three years the staff have collated all of his Research.

healthunlocked.com/thyroidu...

If you and I and all the members of the forum can suss out how best to be treated - why cannot the 'supposed to be knowledgeable' instead of only taking account primarily of the TSH. Some doctors adjust their patients' doses willy/nilly without even having a clue that they are damaging the patients' health and prolonging their agony.

healthunlocked.com/thyroidu...

p.s. Dr Skinner organised a Conference to discuss the 'Parlous Situation' and invited all Endocrinologists. One by one they refused and the last the night before. That, in itself is wholly self-explanatory.

[Blue_Bee in reply to shaws]

Oh my lord, it’s horrible hearing about all this, makes me angry. And it makes me doubley so because the simple fact is that women are the primary sufferers of this disease, and, until very recently the medical profession is hugely dominated by men — and our physiologies are different, plain and simple.

The specialist groups, universities, research bodies and pharma companies still are ALL dominated by men and their own agendas. Without women equally represented in those knowledge and power spheres, our needs are silenced by patriarchal and global commercial dogma - women’s vested interests are simply not represented. THERE! I think my brain function is beginning to return

My daughter is a trainee surgeon and faces this imbalance daily. It’s just the air she has to breath. She is also a strong supporter of taking detailed, solid histories from patients and using their symptoms to diagnose, coupled with all the amazing information that modern tests and machines can gather. We talk about this stuff a lot! She recently had to weather patronising pats on the head, when she insisted on getting the necessary medication BASED ON PATIENT’S SYMPTOMS. The results proved her rounded analysis was correct.

Interesting what you say about too much research Shaws, where is the research on the 5-20% of people who do not respond to synthetic T4? From what I’ve read so far the reasearch cohort is generally taken from across the whole patient community. So results are always skewed towards the T4 successful 80-95%. Medical guidelines will not change without evidence-based research; we need that data to bring about change.

Please point me to any research on the 5-20% I would be very interested.

Thanks so much Shaws

BBxx

[shaws in reply to Blue_Bee]

If our baby was unwell, we know that instantly as mothers.fathers and seek out a doctor, expecting him/her to know how to diagnose baby and give appropriate medication. No speech by baby of course but only going by symptoms.

[waveylines in reply to shaws]

Hi Shaws.....really hope research enlightens us all soon....fingers crossed.

I found my resistance was related to fillers in the tablets. I respond to different brands differently depsite the same ratio of active ingredients. My best response has been since being on a ndt with many of the normal fillers removed. No idea why. Would love to know if any research has been done on that.

[shaws in reply to waveylines]

It maybe that as NDT is made from animals' glands that it is more conducive to the human body rather than synthetic for many people. I am glad you are so much better.

As BTA have made False Statements about NDT where do we turn.

[waveylines]

Glad you feel an improvement. I think your endo was ambitious to get you to stop the t3 all together when the ndt dose is not anywhere near an equivalent. Effectively you have replaced the 20mcg of synthetic liothyroxine for the T3 in your ndt (18mcg) showing that you do really need a high proportion of t3. The question wil be if you can convert t4 to t3 and if so you will be able to gradually increase the ndt & reduce the liothyroxine. However if you cant the t4 will back stack & accumulate. It maybe you will be able to convert some but not all so you end up on a mix of ndt & liothyroxine.

Whatever works is what truly counts! And it sounds like your Endo is prepared to work with & listen to you. Fab!!! Wishing you a continuation of greater health on your journey. Xx 😊😊

[Blue_Bee in reply to waveylines]

Hi Waveylines, What does it mean if the T4 backstacks and accumulates? Is this something I have to look out for?

I’m thinking I can convert some T4 to T3, as when I was just on T4 for the first 8 months post diagnosis, I did improve somewhat and had some small relief from my symptoms. But then my TSH was heading south in the “normal range” and my then Endo (not the one I have now) reduced my dose... and then my troubles really began. I went downhill over 4 months to feeling 10-20% well horrendous!! And that’s when I found this community

My TSH is now suppressed. Will be interested to see what my bloods are in January. I suspect they will be completely off the charts because what is happening in my blood is different to what is happening in my organs, at tissue level.

[endomad]

I am resistant, I take 100mcg per day, i take it before bed 10pm, my endo is amazed i can sleep on it. It takes approx 9 hours to lift me so morning dose pointless. My endo checks tissue saturation by doing my SHBG every 3 months for someone who's t3 works well your SHBG should be between 70-90 i am still at 58 which is low after 17 months t3 only. So still some way to go, I think being unmedicated for nearly 6 years has messed everything up. If i have a busy day i take an extra 25mcg at 9am so i dont conk out (by busy i mean seeing friends for few hours) I have a bone density scan annually and my buddy is cardiologist who has done the scans etc, interestingly he said they did more damage to my heart by forgetting to treat me than a lifetime of t3 will ever do. My resting heart beat averages 65-75 so perfectly normal. I have never had hand tremors or any other sign of being over stimulated. My endo said doseage is also connected to weight when it comes to thyroid meds and thanks to TT i gained 6 stone.

I have yet to meet a dr or endo who knows about achilles reflex!! even at the teaching university.

I did well on NDT initially but i became hypo again, endo pushed me onto levo and it all went horribly wrong. I tried ndt again but remained very ill, turns out i dont convert t4 so i am now t3 only. I have no idea if that will change as tbh i dont fancy trying again and becoming that ill. Luckily i have no problem getting my t3.

This is deff a trial and error illness xxx

[Blue_Bee]

Gawd, trial and error you said it endomad!! shaws youre right, I’m going to get that gene test done. Knowledge is power.

Yep endomad, I take all my meds at 4am and go straight back to sleep. No shakes. Good point about being pushed back onto NDT... thank you for the warning.

And interesting about the SHBG testing. I’m going to raise that with my Endo.

Thanks again for sharing life-saving information!!

[waveylines]

Hi Blue bee,

Think Endomad is a great source of knowledge.

Back stacking of T4 can occur if you are unable to convert t4 to t3. T4 is the storage hormone. Our bodies convert into the usable form t3. However if you cant convert then it stays in your sytem & if your taking levothyroxine or sometime a combined thyroid hormone the level of t4 keeps rising with every medication dose as the body cant change the t4into the usable form -T3.

Paul Robinson is one of those people. He wrote Living with T3 only.

[Hidden]

Hi I am glad that you are feeling better. It has taken me 2 years to sort myself out after my TT. I now take 1 NDT + 1/2 t3 at 6am and then 1/2 T3 at around 2.30pm

This equals only 25mcg of T3 per day + 1 x NDT

[Blue_Bee in reply to Hidden]

Hmm thanks Bunnyjean, always good to hear from others who’re well on the same meds combo, NDT and T3, encouraging. I prefer to take a single dose. I’ve tried the multi-dosing and stopped, primarily because it made me feel sick with alarms going off on my phone all the time, reminding me to take pills and REMINDING me how ill I am. That made me more miserable. Then someone here said it can be okay to take them all in one go... and for me, that is working. We are all different!! So whatever lessens the symptoms for you, THAT is the right path.

In terms of feeling well, it’s still very patchy. I think it would be true to say that I am only just beginning to feel well... on some days... for parts of some days That in itself is huge progress for me. And the fact that I’ve found myself some solid GP and Endo support is huge. I think many here struggle with that aspect, which is just wrong.

[Hidden]

Hi I just self medicate now and don't visit the GP or Endo. I live in France and their are just as bad over here.

I have only been on this NDT + T3 for a few weeks now and the results have been amazing.

I would like to take it all early morning so will be trying this out soon. I agree multi dosing is a pain!!!

[Blue_Bee]

4am dosing also means I can have a cup of tea as soon as I wake up, in bed, waking up gently. Bliss

[FancyPants54 in reply to Blue_Bee]

I set my alarm for 6.30am to take my Levo and then go straight back to sleep so that I too can get up and have breakfast and a hot drink. I really, really hated and resented having to wait an hour, forever watching the damn clock.

4 months on from this post, how are you doing now Blue_Bee?