Feeling really weird

[AleB]

Hi all

I posted just over a week ago. Since then I saw (via zoom) my endo who was happy with my latest blood work from 07/01/22

87.5 per day levo plus 2.5 lio 6am and 2.5 lio 2pm

TSH 1.92 range 0.27 - 4.2

FT3 4.25 range 3.1 - 6.8

FT4 16.800 range 12 - 22

previous bloods 10/12/21

on 100/100/75/75/100/75/75 plus 2.5 lio 6am and 2.5 lio 2pm

TSH 4.64 range 0.27 - 4.2

FT3 3.92 range 3.1 - 6.8

FT4 15.00 range 12 - 22

The only change I made from previous results10/12/21 was to increase by 2.5mcg per day on levo. The T3 of 2.5 at 6am and then 2.5 at 2pm. My endo suggested that I increase my Vit D back to 2000 per day, well this is day 3 and although my muscles feel better, the thyroid meds on a morning have me feeling overmedicated. My heart rate has gone from 72 to 92 within 2 hours. I walked to the dentist this morning really briskly but feeling knackered, as though my body can't keep the pace with my heart (if that makes any sense)! Yesterday I had to go to bed at 9.30am, this morning I felt really awful at the same time. It's now just after 11am, I feel slightly nervous, very cold! Endo has signed me off now! 87.5 mcg levo and 2.5 x 2 per day on Liothy. I suspect that the reduction of Vit D from the 14th Dec to 1000 per day masked the true problem. Could I try to take the levo at night and continue with the t3 at the normal times of 6am and 2pm. Whilst the very slight increase in T4 has helped with not sleeping on an afternoon, I have banging adrenals, right hip bone pain and my hair is feeling very thin on top! Should I reduced the T4 or T3 or reduce Vit D as previously suggested by SlowDragon to 1000/2000 alternate days. My Vit D is 134nmol/L from 10/12/21. Sorry to be a pain again asking questions.

[AS14]

HiIm still learning myself so there are other members far more knowledgable than me who can advise on your tft’s and on how to move forward from here.

However I can tell you what Ive found when taking T3/ndt.

I know I needed T3/ndt and have a several attempts and apart from one very brief positive response I felt either no better or felt far worse which I didnt think was possible.

My symptoms when trying T3 where severe anxiety, nigh on full on panic, I felt jittery, on edge, my heart raced and my adrenals hurt a lot.

It was very confusing how come the very thing I need either isnt working or is making feel so ill.

It turned out I had low cortisol and low serum iron, if either these are less than optimal you can get symptoms exactly like I had or feel no better taking it.

From what Ive found it seems to be quite common and thoroughly confusing and people end up thinking its the T3 causing the problem, its not you just have the right nutrients to get it working properly.

I can tolerate 1/2 grain of ndt and I use that as a CT3M dose and my very low cortisol is now 60-70% through range.

CT3M was developed by Paul Robinson , its basically taking T3/ndt in the cortisol production window which is the 4 hours before you get up.

Im still working on getting my serum iron high enough so the ndt isnt making me feel any better yet but its done wonders for my cortisol.

It felt very complicated at first but its not all Ive done is take a small amount of ndt at some point in those 4 hours.

I have Paul Robinsons books Recovery with T3 and theCT3M handbook, when I first read Recovery with T3 he was pretty much describing how I felt, turns out its far more common situation than I thought. Some people dont get well on T4 only and need T3/ndt which is hard enough to get then if they cant get it to work theyre lost thinking they cant take it. I know how I felt, its awful I thought there was nothing more I can do but it turns theres perfectly logical reasons and he explains it all in his book, its just T3 needs certain things to work well. Cortisol and serum iron seem to be the most common reasons.

Paul Robinson has hypothyroidism, I think its Hashimotos it took years to recover his health. He never got on well with T4 and eventually he got T3 and improved but not fully well and thats when he found he had low cortisol and developed the CT3M method and he got well and is doing great.

[AleB in reply to AS14]

Thank you for your post, after reading it does match what I'm feeling at present. To be honest, I think my adrenals have been struggling for years. It would also account for the waking at 2.30am prior to my first dose at 6.15am, it would also explain the fatigue and low body temps and low blood pressure (since September), that seem to plague me daily. Would it be an idea to get a cortisol saliva test (medichecks) and accompanying blood test? Should check my iron, B12 and foliate, last done early December.

[Simplyred57 in reply to AleB]

Hi what do you mean by banging adrenals and hip pain please, I have a very painful right hip and just above in kidney area GP ruled out kidney stones and are now putting the pain down to sacroiliac joint and referred pain ?

[AleB in reply to Simplyred57]

Hello, really painful in the kidney area. Not a uti or kidney infection, it's like a needle being stuck in and out! The hip pain is intermittent, I always have red skin on either side of the hips, nothing has ever been done about it, though to be fair I have never brought it to the GP's attention... waste of time. The rheumatologist did however look at it and question, thorough investigation for arthritis, very knowledgeable about b vitamins etc. Generally flares up when thyroid meds are off... which given the last 3 years, a bit too often!!

[Simplyred57 in reply to AleB]

Thank you yes mine is a sharp stabbing pain I’ve had an X-ray of my pelvis area and am awaiting results , but think I need to investigate this further x

[AS14 in reply to AleB]

It can get thoroughly confusing trying to work out whats causing what symptoms, thyroid adrenals and low nutrients can have some similar symptoms. We’re frequently not on the right amount of hormone as doctors are driven by tsh only.

Hypothyroidism causes low stomach acid which means we dont absorb nutrients well

Thyroid hormones must have nutrients at optimal levels to work well.

Low nutrients are very common for us

Adrenal issues often go hand in hand with low thyroid.

You can see how it can get very confusing, so you need to be systematic and check all the things that are needed.

Skipping on testing the key nutrients now can cause problems later, I didnt know I needed to test the full iron panel, big mistake.

Your thyroid tests show can explain how you feel, hypothyroid basically.

If you have any low nutrients they can make you feel awful. I know low iron can feel similar to hypothyroidism, it certainly contributed to feeling like a zombie for me.

Adrenals can cause lots of different symptoms.

Check the key nutrients, vit b 12, folate, vitamin d and I personally recommend the full iron panel . Dont just test ferritin, I did and missed low serum iron and thats the very thing causing problems which are taking a long time to fix.

Medichecks saliva cortisol is my first choice, Ive tried 3 different companies and these are the best one in my opinion.

Im afraid I cant help with thyroid meds, I dont know enough to suggest what you do but you are most definitely hypo you have the classic symptoms and your results show you need a dose increase NOT a decrease Im just not sure what that is.

If you havent already wrote a post asking for advice for that if you post your results with ranges Im sure someone far more knowledgable than will help.

[AleB in reply to AS14]

Thank you for your post, I did have ferritin and B12 active and folate bloods done on 10th December all optimal. I have been tested in the past for cortisol, which wasn't too bad, slightly low first thing (thyroid meds not optimal). Had scans (mri and ultrasound) of kidneys, again all fine. Will see if medichecks do full iron panel and cortisol saliva test plus bloods and will post when I have the results.

[AS14 in reply to AleB]

Medichecks do the full iron panel, its good its the only one I use and I use it often. It tracks results over time which really helps.

The one I get I think is £39 and it includes crp ( inflammation marker) as well as the full iron panel. Crp if raised can affect ferritin so worth checking.

They also do the saliva cortisol as well as blood cortisol. Ive done both several times and seem very accurate to me.

The blood cortisol only tests one time 8-9am but I use it if I change my CT3M ndt dose time. The earlier in the 4 hour cortisol production window the higher my result will be, the closer to getting up the lower cortisol will be. Its very predictable you see how cortisol level is affected just by taking meds a little later or earlier.

Your other results are optimal, make sure thats whats considered optimal for us not just in range

[AS14]

I should add do not supplement unless you know you need to, too much of nutrient can be bad iron especially. Going off symptoms alone can cause problems you cant possibly know whats causing a symptom and its very easy to make mistakes.

I

[Batty1]

I walked to the dentist this morning really briskly but feeling knackered, as though my body can't keep the pace with my heart (if that makes any sense)!

Yes and wish I knew why this happens but it looks like you could use some updated blood test since the 2 you posted are older and Im sure you know this but Vitamins shouldn’t be taken anywhere near your thyroid meds.