Advice Please Re Results

[Todd]

Attached below are my results for June. Was on 1.5 Nature Throid and now been increased to 2. I split the medication to morning and afternoon, always at least 1 hour prior to food. Am 18 months post Radiodine therapy following 8 years Graves and now Hashis. Not really feeling great, feeling a bit hyper and sometimes shaky and resting pulse is raised. at the same time often feel really tired. Much better though than when I was on Levo only. I am strictly gluten and dairy free and supplement with vit D (spray) vit C, selenium and a good probiotic. When I had my vits tested my iron was high. My practitioner, who I am seeing privately has suggested that I get my iodine checked and have a thyroid ultrasound. Sadly my GP appears to know very little about thyroid function and providing myTSH falls within NHS guidlines thinks that any further tests are irrelevant. Any advice to optimise medication would be gratefully received.

[SlowDragon Administrator]

These results are from before dose increase presumably?

FT4 and FT3 both look low

Have you had B12 and folate tested?

Do you supplement vitamin B complex?

What's Vitamin D result?

How high was ferritin?

[Todd in reply to SlowDragon]

CRP HS 0.82 (<5)

Ferratin 265 (13-150)

Folate Serum 19.76 (>3.89)

Vit B12-Active 146 (37.3-158

Vit D 48.4 (50-175)

These results were taken in March. Have bought Dlux 3000 Vitimin Spray which I am using once a day

[SlowDragon Administrator in reply to Todd]

Has your GP done full iron panel to check only ferritin is high, not iron as well

I have similar high ferritin, I assume due to inflammation of Hashimoto's. GP checks my iron

[Todd in reply to SlowDragon]

Neither my GP or the Endo I saw privately ever tested my vitimins or iron status. The only thing they checked were TSH and the endo checked T4, never T3 or vits. I have not shared these results with my GP because I have no confidence whatsoever. In desperation about 18 months ago, I saw a private GP who specialises in Thyroid issues. He is ok but I do feel it is just a money making racket. The only reason I see him is because he will prescribe NDT. I got talked into radiodine treatment and with hindsight wish I had resisted. I am tempted to just source NDT myself and rely on this forum for advice on dosing.

[SlowDragon Administrator in reply to Todd]

Completely understand

So you might want to test full iron panel privately just to check iron is not too high

[Todd in reply to SlowDragon]

And yes, the results were taken prior to increase. Have been on 2grains BD for the last two weeks.

[greygoose]

Why does he want your iodine tested? Your results don't suggest low iodine, they suggest someone with Hashi's and not much thyroid left. You are getting nearly 60 mcg iodine a day from your NDT alone. And, then there's what you get from your food. So, doubtful you'd be deficient.

[Todd in reply to greygoose]

I wondered that as well. I just feel I am on a money making go round at my expense. Since I saw private practitioner, he has recommended a load of tests (all very costly). In fairness I had an imupro test done which flaged up a number of alergies (gluten, dairy and some others) and that has been very usefull and as a result I went gluten and dairy free.

[greygoose in reply to Todd]

I wouldn't bother with the iodine test, if I were you. What would you do if it comes back low? Does he have any idea how to treat low idoine? I rather doubt it. And, in any case, that is not recommended with Hashi's.

[Todd in reply to greygoose]

Thank you for your good advice. I just somehow feel that I must be doing something wrong to get these results that are not optimal. 18 months post radio I really hoped that I would be in a better place. Having said that, when I was initially prescribed Levo alone and took it for nine months, I have never felt so ill. Although things have improved with NDT, I am still getting both hyper and hypo symptoms but at least I can now function albiet on a fairly low level.

[greygoose in reply to Todd]

I'm just curious about something… If you had RAI, how come you've got Hashi's now? Was not all the thyroid destroyed by the RAI? Did you really have Grave's in the first place? Did they test our TRAB or TSI to prove you had Grave's? Or did they just assume you had Grave's because you had a low TSH?

The only thing you could be doing wrong is not taking your NDT on an empty stomach, or not waiting an hour to eat, or taking other medication/supplements at the same time as your NDT.

If you're not doing any of those things, then none of this is your fault. You have some sort of absorption problem. Do you know if you have low stomach acid? Leaky gut?

[Todd in reply to greygoose]

I think they diagnosed Graves because of the antibodies + symptoms. I took carbimizole initially for 18 months and improved a lot. I then had a period of about 2 years where I was ok'ish then relapsed. I was given carbimazole again and improved but at that point I was persuaded into having radio.

I always take NDT at least 1 hour before eating and yes I think I have a leaky gut. Had an Imupro test done and it came back with loads of elevated levels to foods. I then did a 6 week elimination period and gradually re- introduced some of the restricted foods (I have not introduced gluten, dairy or peanuts) as they were off the scale.

[SlowDragon Administrator in reply to Todd]

Approx 80% of Hashimoto's patients are gluten intolerant

Slightly less lactose intolerant

Non Coeliac Gluten sensitivity 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

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

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.

88% benefit from strictly gluten free diet

thyroidpharmacist.com/artic...

Going gluten free is a strategy that everyone with Hashimoto’s should try. In some cases, we see a complete remission of the condition; in other cases (88% of the time), the person feels significantly better in terms of bloating, diarrhea, energy, weight, constipation, stomach pain, reflux, hair regrowth, and anxiety.

todaysdietitian.com/newarch...

Many clinicians report that eating a gluten-free diet may help improve thyroid function in nonceliac gluten intolerance. “Getting gluten out is primary for patients with Hashimoto’s, even without celiac disease,”

Lactose intolerance is also very common with Hashimoto's

ncbi.nlm.nih.gov/pubmed/240...

Lactose intolerance was diagnosed in 75.9 % of the patients with HT

read.qxmd.com/read/24796930...

These findings show that lactose intolerance significantly increased the need for oral T4 in hypothyroid patients.

[Todd in reply to SlowDragon]

I follow a strict gluten and dairy free diet. I have coconut milk as I tested as being allergic to almonds and I can't stand the taste of soya.

[SlowDragon Administrator in reply to Todd]

All soya is terrible for thyroid patients, so good you don't like it!

[Todd in reply to SlowDragon]

It's vile, fortunately I get on very well with coconut products and only use coconut oil for cooking. Think I will improve if I can just get my dosing correct. I am currently taking Nature Throid.

[Rockhuntress]

You are hyperthyroid. Dont think you should be on hypo meds now?