Latest labs look good?

[crw2ddd]

Here's the deal. I've felt terrible since June 2017 when I was diagnosed with postpartum thyroiditis. I likely had Hashimotos for many years prior but wasn't ever diagnosed. At the time of dx, my TSH was over 100 and free levels were tanked. Symptoms flooded in over the following months including crushing fatigue, air hunger, extreme body aches, cold, hair loss, depression, and an eye pain with light sensitivity, eyelid swelling and overall malaise. I started on 50 mcg Synthroid which made absolutely no difference in symptoms despite "normal" labs. I added a small amount of cytomel (5 mcg) that helped immensely at first my body aches that I experienced for a year ceased and my eyes started to feel better. However I had extreme energy crashes in the afternoon. Three months later in November 2018, my labs showed I was overmedicated and I did have some symptoms like hot, sweaty, itchy. I now recognize that it was probably a hashi flare. But my doctor took me off the cytomel and decreased my Synthroid to 50 mcg five days a week. Initially, I felt okay, but then my results swung in the opposite direction and my TSH went up to 14 in January 2019, and I had all the regular hypo symptoms again along with a new symptom of itching in my gland/neck area and the start of peripheral neuropathy in my hands.

I switched doctors and started seeing a more integrative thyroid specialist. She upped my Synthroid to 75 and tested again in February 2019.

FEB 2019 (same ranges used for all the subsequent results below)

Free T3: 3.0 (2-4.4 pg/mL)

RT3 32.3 (9.2-24.1 ng/dL)

Free T4: 1.58 (.82-1.77 ng/dL)

Tsh: 3.790. (.45-4.5 uIU/mL)

TPO ab 258 IU/mL (0-34)

Thyroglobulin AB 1.0 (0-.9 IU/mL)

I still needed some T3 so we added some slow release t3, just 4 mcg. It didnt help much with symptoms and I still had crashes.

APRIL 2019

T3 1.9

RT3 39.3

T4 1.42

TSH .551

TPO 198

Thyroglobulin AB 1.0

After this appt we stopped the slow release t3 and added 15 mg armour in the morning and 15 in the afternoon as well dialed down to 50 mcg Synthroid once daily and this is what happened. My crashes stopped and now j just feel hypo.

MAY 2019

T3 2.6

RT3 25.5

T4 1.39

TSH 1.44

Thyroglobulin AB 1.0

TPO 142

We added just an extra half of armour in the AM to help relieve symptoms and boost t3 after these results so my regime is 15 mg armour plus 7.5 armour in am and 15 mg armour in PM and 50 mcg Synthroid once daily and these are my latest results. Also prior to this latest test, I always tested first thing in am before meds or food. But it was a long gap between when I tested in AM and my priors days afternoon armour dose (15 hours) so my t3 was maybe reading a little low. So this time I tested at 3 pm...12 hours from Synthroid and 8 hours from AM armour dose.

T3 3.3

RT3: results not come in yet

T4 1.58

TSH .629

TPO 112

Thyroglobulin <1.0

Vitamins:

B12: 402 pg/mL (15-150)

Folate 19.5 ng/mL (>3)

Ferritin 38 ng/mL (15-150)

Vit D: 41.8 ng/dL (30-100)

These latest thyroid results look good actually, the best I've had since diagnosis two years ago. My antibodies are coming down and my free levels are going up and my TSH is good. The thing is - I'm only better on paper. I'm not better in any real way. Yes, I feel a little better in some ways, but not a single day has gone by in two years were I didn't deal with some symptoms. Today I have crushing body aches all over my body. I have random itches and like an increasing nerve sensation that sometimes feel like a stinging and sometimes like a dull buzzing electric sensation on my arms. I have rib cage pain and my eyes are light sensitive and a little gritty. I get a foggy head and have difficulty concentrating sometimes and my energy and mood comes and goes. I have sinus pressure and TMJ with jaw soreness all the time. After physical exersion I have a long recovery time with soreness and achiness and sometimes joint pain. Since starting armour it feels like I have an elastic waistband around my waist that's rubbing me...a weird sensation. My last period lasted 8 days followed by 3 days of spotting so 11 total days. I have very exaggerated PMS and increased symptoms at ovulation including fatigue and body aches. I get dark bruises randomly, mostly on my legs. Sometimes I feel like my tongue is mildly swollen and burns a little. But then it goes away for a while...I don't understand any of this!

I have switched to a whole foods diet for the most part and gone gluten free. I eliminated my H Pylori and take zinc iron gluthathione Omega 3s selenium and sometimes a b complex, vit D, magnesium and probiotics. Occasionally, I take digestive enzymes and Betain with Pepsin. I do an eyelid scrub and moisture drops at night. I wear a night guard at night for TMJ. Ive had a lot of tests done. Did a 23 and Me DNA test and found to have a Gene linked to low dopamine receptors and an increased susceptibility for celiacs disease. That's it. I have seen a rhumatologist who discovered a positive ANA and nothing else and didn't have any recommendations. I have had a food sensitivity test with no severe sensitivities and some moderate sensitivities, the worse being corn garlic eggplant cashews ginger sesame and soy. I eat these things sometimes. I realize that armour has corn in it, so maybe my corn sensitivity is worse than I realized. I use green cleaning products and clean beauty products and buy organic.

I've had an endoscopy and colonoscopy (mild chronic inflammation in small area of left colon and mild gastritis with h pylori was the finding). I don't know how many comprehensive metabolic panels. I had and a chest x-ray for sarcoids and a Lyme test and thyroid uptake scan and multiple thyroid ultrasounds and my ovaries ultrasound and I've seen a hematologist for the bruising to see if there is a bleeding/ clotting issue. I'm headed to the neurologist next to follow up on nerve issues that have cropped up in last 6 months and persistent pain. Also, I'm 33 years old for God's sakes. I have a 2 year old and a 6 year old and I've been drudging through the days looking for ways to feel better for daughters entire life. It feels like I'm throwing darts into the night trying to figure all this out. Do I have seronegative sjogrens? Do I have pernicious anemia that's not effecting my serum b12? Do I have M.S.?, Do I have fibromyalgia or M.E. or CFS? Are my symptoms still being cassed by not finding the optimal and right brand of thyroid medication for me. I just don't know. Nobody does. Sorry for the rant. I'm just frustrated when my thyroid results come back better and I don't feel any better.

[Judithdalston]

Your ferritin and vit D are low for hypo/Hashi sufferers.... vit d should be in 100-150 range and ferritin 70 plus even 100-130 at your age still menstruating. So are the supplements you are taking appropriate doses and compounds? Ferrous fumarate for eg taken with vit C, and vit D as drops or oral spray with vit K2...look up old Seasidesusie posts on supplements brands, doses etc. I have had tingling/dizziness etc and had ok b12 active blood results, but then had taken it orally from say 18 months ago when ferritin, folate, vit D were a bit low, but symptoms persisted and recently went to Gp. She just tested for calcium deficiency and general bloods, tho had asked for more B12 (like MMA or hCys) and neural tests...but only got receptionist phoning back with message to ‘lower my levothyroxin’. Look at sister HU site for Pernicious Anaemia, i’ve gone down self injecting b12 route, and some symptoms appear to be lifting.

[Marz in reply to Judithdalston]

VitD is a ng/L measurement so around 60 plus would be better ... ( US measurement and here in Crete )

😊

[Judithdalston in reply to Marz]

Good job you spotted it, might have done on shorter post! X

[Marz in reply to Judithdalston]

Easier for me coz our D3 here is the same measurement

[greygoose]

Your results may be better now, but your FT3 is still just over mid-range. You probably need it higher than that.

It doesn't matter that your TSH and antibodies are coming down. Neither of them cause symptoms. TSH is bound to be low when taking T3, and that's just fine, but in itself isn't going to make you feel better. It's the FT3 the most important number. And, it doesn't matter how low your antibodies go, you'll still have Hashi's, because the antibodies aren't the disease, they're the result of the disease. So, really no point in testing them every time.

Has your doctor said nothing about your high rT3? The problem with testing rT3 is that there can be many causes, but the test doesn't tell you what is causing it. Not much point testing rT3 if the results are going to be ignored, and the cause not looked for.

It could possibly be your dire ferritin. Has she not suggested supplementing that? Or doing an iron panel? Your vit D is also low, which won't help. All nutrients need to be optimal - not just in-range - for NDT to work properly.

So, your next step should be a small increase in NDT, further investigation for the low ferritin, and possibly an increase in supplements for the vit D, with vit K2-MK7 and magnesium. Then see how you feel.

[crw2ddd in reply to greygoose]

Thank you for your response. I saw an hematologist back in October and my iron panel result was below, I don't know quite what they all mean. The doctor told me I could stand to take some iron, but never recommended a particular dose or type. I sometimes take Iron from amino acid chelate 29 mg. But I'm starting to think it is not a good type or dose. It also gives me a bit of the runs.

Iron Binding Cap (TIBC): 338 ug/dL (250-450)

UIBC: 249 ug/dL 131-425

Iron: 89 ug/dL 27-159

Iron Saturation: 26% 15-55%

Ferritin: 41 ng/mL (15-150)

While I was pregnant they tested ferritin and it was up in the 70s. So, I'm don't know if the breastfeeding in combination with the aggressive hashi attack postpartum or heavy mensus from being hypo drained my iron stores or what. But, I definitely need some guidance and a plan for how to supplement the iron to boost my ferritin to optimal. As for vit D, I need to also get some guidance on dosing and brands. I have an appt on Monday with my endocrinologist hopefully she can advise. I wonder if the Synthroid should be stopped and I should take straight NDT.

[greygoose in reply to crw2ddd]

I'm afraid I'm not an expert on iron, so cannot advise you what to take - although I have heard that eating liver once a week is the best way to raise your levels. I would suggest your post a new question asking just that in the title, then those that do know can respond.

If your ferritin was 70 when you were pregnant, it was still too low - especially for someone who's pregnant. Didn't they give you iron then?

I somehow doubt your endo can reply to your questions. They don't learn about nutrients in med school, and are notorious for prescribing - when they prescribe! - the wrong type of supplement and not enough.

I've just been reading your reply to Jazzw. Dosing is not related to weight. The weight equation is for people who've just had their thyroid removed, to start them off after the op. It is adjusted later to their needs (hopefully!). So, you really do need an increase in dose. Whether or not you need to leave off the levo depends a lot on your results once you've optimised your FT3 - and your personal feelings on the subject. People need different levels of FT4, and some - like me - are completely happy without it!

[Jazzw]

So you’re on three quarters of a grain of NDT and 50mcg of levothyroxine. Or the equivalent of roughly 80mcg of levothyroxine and 7mcg of liothyronine.

Quite simply, you’re under-replaced and need an increase in dosage. If it were me, I’d keep taking the 50mcg of levothyroxine daily but up my NDT to a grain a day (60mg). You can divide the dose if you like but I don’t and it doesn’t seem to make much difference. If that doesn’t seem to be enough after you’ve given it a few weeks, up the dose by another half grain (30mg). I think the dose increases you’ve had just aren’t big enough to make a difference.

[crw2ddd in reply to Jazzw]

I've thought this many times as it seems the dose I am taking is much less than many others. I have heard that it's all or nothing when it comes to thyroid hormone replacement -- that once you start taking the hormones your body stops making it and you absolutely must get up to a full replacement dose to feel well. In other words, you cannot simply supplement a thyroid hormone and expect your body to make up the difference. My mom for example, takes 1 grain in AM + 3/4 grain in PM for her hashi and has no issues. My aunt takes 1 grain in AM and 1/2 grain in PM and 25 Synthroid on the weekends. I am taking 50 levothyroxine and then not even 3/4 grain armour because I only take a 1/4 grain with an 1/8 grain in the morning and a 1/4 grain in the afternoon. Seems a pittance compared to others. Granted I am only 100 pounds and I have read dosing is somewhat related to weight.

[Jazzw in reply to crw2ddd]

Somewhat but it’s not a given because of the variances in how well you can absorb the thyroid replacement. It’s more about it being a place to start...

We’re all a little bit different and therefore need our replacement dosages tailored to our own needs. Are your mom and aunt a similar weight to you?

In any case, when you’ve been hypo (and undertreated) for a while, your gut absorption tends to decrease, which will be partly the reason why your ferritin and B12 levels aren’t higher. It’s also quite likely your Vit D levels are too low but best to find out before you start supplementing.

[crw2ddd in reply to Jazzw]

Thanks for your comment. No, my mom and aunt are about 140-150 pounds, so they are noticeably bigger than I am. I do have some gut issues -- I had IBS like symptoms for ten years before diagnosis and I also was found to have H.pylori two years ago, which has now been resolved, but did not help matters. I was found to have mild gastritis and an area of mild colon inflammation on a colonoscopy and endoscopy when the h.pylori was discovered. I take a probiotic and I am considering taking a GI Map test or Comprehensive Stool analysis by Genova Diagnostics to dig deeper into ways I can better my gut. My digestion doesn't much bother me much now anymore but I'm sure there's room for improvement with further testing. In any case, perhaps that is why my vitamins are on the lower end, except folate is pretty high and I think it's due to the high number of vegetables I eat. My vitamins D is listed above at 41. Two years ago it was 30, so it had gone up a bit but still needs improving.

[Newmummy82]

I’m so sorry you still feel so poorly. I was getting some of symptoms you mentioned when my iron was low ( ferretin 36) I’ve been supplementing with ferrous fumerate once a day with orange juice for 3 months and lots of the symptoms have lifted (the lack of energy, breathlessness, buzzing in my feet and hands) my ferretin is now 48 so I’ve got a long way to go yet but feel so much better already.

I also have TMJ and found that botox injections in the jaw muscle was the only thing that really helps.

Hope you feel better soon.

[crw2ddd in reply to Newmummy82]

My TMJ can be very severe at times and seems to correspond with severe sinus pressure - no congestion issue just pressure in my face where my sinuses are located. I'm not sure if I have hay fever or something like that as well or if it's just another autoimmune/hashi thing. I will definitely look into taking ferrous fumarate right away to lift my ferritin -- thanks for sharing

[Newmummy82]

I also get body aches if my vit d drops below 60ish, I’ve learned I need 1000 ug D3 every day even in summer or my levels crash and I quickly feel terrible.

[crw2ddd in reply to Newmummy82]

Thank you I will ask my endo about the best ways to supplement at my next appt. I understand magnesium and vitk are also important. I am not good at being consistent in my supplements

[Newmummy82 in reply to crw2ddd]

Try a magnesium spray, I use one before bed by ‘better you’, it relaxes the muscles and helps with sleep and is a better way for me to get magnesium into my system as supplements messed up my digestion.

[Newmummy82 in reply to Newmummy82]

I found a little magnesium spray rubbed into the jaw also helped with the TMJ so that might be worth a try as well.

[crw2ddd]

Update: just back from the endocrinologist. She said my labs looks "beautiful" and going in the right directions and to keep doing what I'm doing. And here I am struggling to get through and day with all over aches and pains and nerve issues and fatigue. She wants me tested for Lyme as she said some of my symptoms seem to overlap. We're also going to do a GI effects test, saliva cortisol and micronutrient testing. I mentioned my lower ferritin and lower vitamin D levels and she said there is room for improvement there but she doesn't think that is what's causing the symptoms. It seems a common thing on here to point to Ferritin, but I was feeling unsure after ready this article by Tom Brimeyer:forefronthealth.com/hypothy...