Latest encounter with ANP and blood test results - where to now?

[tzracer]

Recent test results.

T4 15.8 pmol/L (11-22)

T3 7.9 pmol/L 3.1-6.8)

TSH <0.01 miu/L (0.49-5.23)

TPO 187.6 U/Lml (0-59.0)

Thyroid autoantibodies <1.10 UL (0-1.8)

Plasma ACTH not done as cortisol in range (wasted trip to hospital)

Serum Cortisol 263 (166-507)

So I have hasimotos, that I didn't realise I had. I'm sure I asked the endo and he said no point now you're being treated. Weirdly I have found a tpo test in my records with no range of 150, don't know how I've overlooked it, except for brain fog.

I took my night dose of 6.25mcg T3 thinking it would be OK 12 hours later. But Obviously not.

So the GP keeps dropping levo on instructions of endo and I feel worse but again they can't get past the low tsh, it's all the endo has been interested in for 2 years.

Now I have a nurse practitioner to deal with. Who is trying. After sending me for ACHT test (that was a waste of half a day) she has now written this to endocrinologist

"Patient reluctant to reduce dose of thyroxine as he becomes symptomatic. I would be grateful for your expert opinion and a management plan going forward. Thank you."

His response:

"he is at risk of cardiac complication and osteoporosis the dose of thyroxine should be reduced. His symptoms are not thyroid related as he is over replaced TSH has been supressed for a couple of years and it had proved hard to convince him to reduce the dose of thyroxine"

I think that's usual scare tactics from reading past posts.

So after phone consultation with her, it's a 25mcg drop in levo and the pharmacy only has teva in 25mcg when I'm used to record, hoping I get on with that on top of the drop.

So prior to that, I have been reducing the T3, because in the back of my mind I never took the levo past 150mcg and didn't get the vitamin D optimal.

I had worked up to 150mcg levo and 12.5mcg T3 at night and 25mcg T3 on waking, but was crashing energy wise at 5pm, so split the 25mcg to waking and mid afternoon which helped a bit.

So I can't recall ever having any noticeable issues with taking T3. I was running and triathlon training in 2016. But it wasn't easy at all. Didn't really loose that much weight and body temp was in the 34's.

On the 150mcg levo and 37.5mcg T3 my results were both in the top end of the range and while I wouldn't say I felt normal, I felt better than I had in quite a few years. It was only when they insisted on lowering the t4 I felt bad. Now the T4 isn't returning to the same level. Which is making me wonder if it was the hashimotos adding to that?

I would say my main symptoms are fatigue, constipation, brain fog, tinnitus, weight gain, low mood and low temp. All worsen when I lower T4.

I've been trying to improve gut function with homemade kefir and apple cider vinegar with meals, I now use HCL. As I did the burp test and nothing happened. Couldn't get vitD above 57 on the 1600iu the endo prescribed. So I have been taking 5000iu sublingual vit d. Doctor wouldn't retest, but has agreed too on next test along with vitamins.

So there's a lot going on. I'm not sure if I should continue with the T3 reduction as well as the levo. I think ultimately it needs to lower as I am very gradually losing weight when I think I should be stable.

I'm going to write to the doctor and ask to reduce the T3 and reinstate the T4. I'm not sure why the endo thinks the T4 reduction will increase my TSH (because it hasn't done previously). Unless that's all he knows and doesn't usually treat his patients with T3, or by reducing T3 would it look like he was over medicating me? Who knows.

I feel like his comments were more a poke at me for not accepting his treatment recommendations. Is the ongoing treatment plan to just continue lowering levo?

Sorry if all of that's a bit scatty my head is a mess with it.

I think I'd like to refute the cardio and osteo claims with some research papers.

Anyone come back off combo therapy and got T4 to work, I really wanted to try NDT but it sounds like that is a nightmare for people at the moment and there's no way I could afford to do it privately.

Will my TSH rise again after being suppressed for so long?

Does conversion go on regardless of TSH, its just that your Thyroid won't release T4 with it suppressed?

So I theory if you put enough T4 in and have optimal conditions you'll get conversion to T3 and the TSH not recovering won't be an issue?

[SlowDragon Administrator]

As you have Hashimoto’s vitamins are often low

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

Are you on strictly gluten free diet?

If not, it’s always worth trying

Recommend wearing a Fitbit or equivalent to record resting heart rate and activity levels.

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

healthcheckshop.co.uk/store...?

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Frequently we need GOOD Ft4 levels and small doses of T3.

Ft4 has room to go higher

Suggest you try to reduce morning dose of T3 by 1/4 tablet

Perhaps aiming to very slowly reduce T3 to 1/2 tablet in morning, 1/4 tablet mid afternoon and 1/4 tablet at bedtime

[tzracer in reply to SlowDragon]

Thanks for reading through my post and for the advice, I will look at it I'm more detail after work and answer your questions.

[SeasideSusie Remembering]

tzracer

I took my night dose of 6.25mcg T3 thinking it would be OK 12 hours later. But Obviously not.

How much T3 in total daily were you taking at the time of the test?

Splitting the dose during the day and taking the last dose 12 hours before the test should give an accurate result, so it would seem that as your FT3 is 7.9 pmol/L (3.1-6.8) then you are taking too much T3.

We all need to experiment to find our optimal doses of Levo and T3, we're all different in that respect. I need both my FT4 and FT3 fairly well balanced (I'm on Levo and T3) and around 70% seems to be good for me. Maybe you need a higher FT4 and a lower FT3, in which case reducing your total dose of T3 initially and increasing your Levo slightly might be helpful.

[tzracer in reply to SeasideSusie]

Thanks for your reply. At the time of the test it was 6.25mcg night, 12.5mcg waking and mid afternoon. I took my levo after the test. In hindsight I probably took T3 prematurely, my conversion wasn't great but nether were my vitamins. But it was easier to obtain than levo and I hoped (falsely) it would be a magic fix for me. Its easy to get desparate and fixated on somthing when you just want to feel normal again.

[tattybogle]

Why does endo not mention T3 at all, has he forgotten you take it ?Seems like the more obvious suggestion for him to make would be to reduce T3 dose, since it's the fT3 that is over range.

[tzracer in reply to tattybogle]

I can't understand it either. I'm going to ask why when I order my T3 prescription.

He only seems interested in TSH.