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Thyroid UK
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Thyroid Dilemma

Thyroid dilemma

Hi all. Im in a bit of a dilemma. I had a thyroidectomy six months ago....was put on eltroxin for twenty weeks....was not being absorbed so was changed to armour thyroid...am now six months in and medication still not being absorbed. Went to endocrinologist last week and he was so shocked as my tsh levels were 128...he said they should be between 0 and 4 and was so surprised that I'm still standing..... said he needed to get me into hospital asap to get tests done in case other problems as something has to be stopping the absorption. I also have multiple gall stones.....as I have no health insurance I'm still awaiting to get into hospital. Any ideas guys or anyone in same situation..

53 Replies
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Test your vitamin D, folate, ferritin and B12

Did you have Graves' disease?

Consider strictly gluten free diet and/or low stomach acid

Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise

Low vitamin levels stop 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

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

Gluten also linked to Graves

But don't be surprised that GP or endo never mention gut, gluten or low vitamins.

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

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

Low stomach acid can be an issue

Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

thyroidpharmacist.com/artic...

drmyhill.co.uk/wiki/hypochl...

scdlifestyle.com/2012/03/3-...

healthunlocked.com/thyroidu...

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Have had all vitamin levels checked....don't have graves....if anything more likely to have hashimotos

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Do you know what vitamins I should be taking and doses please

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Are you taking any medications or supplements around the same time as your thyroid hormone? What dose of Eltroxin were you on?

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I went from 50 to 150 on eltroxin. I'm taking vitamin d around 6 hours after thyroid medication and magnesium spray at night on my joints and fish oils once daily in evening. I'm only taking these in past 4/5 weeks

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Ask your Endocrinologist if you would be able to switch/try to Nature-Thyroid. I had been put on every synthetic thyroid medication there is and none of it worked. Armour Thyroid worked until 2000 when the formula was revamped. The only thing that works for me now is Nature-Thyroid with an Iron supplement.

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I'm on np thyroid now

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But evidently not nearly enough. Are you taking it in split doses (because of the T3) at least an hour away from food and any drink except water?

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I take 120mg in morning on empty stomach

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Are you also taking an iron supplement? Some brilliant person on this site, suggested it to me and it was like magic. Everything worked.

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I take vitamin d and b complex and magnesium....that any good

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Does it have to be just an iron tablet or a multivitamin with iron and what dose of iron please

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Just a standardized Iron supplement OTC. I noticed the difference in 3 days. More energy, weight loss, no more brain fog and no more low grade depression.

I take other vitamin supplements too however, it was the Iron that made the difference.

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What dose iron...what else you take

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Would a multivitamin with iron in it not suffice

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Alpha Lipoic Acid 600 mg.s A.M.

B-Complex Standardized A.M.

B-5 Standardized A.M.

Pantothenic Acid 500 mg.s A.M.

B-6 Standardized A.M.

C 1000 mg.s A.M.

CLA Standardized A.M.

Co Q 10 100 mg.s A.M.

Green Tea Standardized A.M.

E 1000 IU A.M.

Ginseng A.M.

Phosphatidylserine A.M.

Iron 65 mg.s P.M.

Kelp Standardized P.M.

Wild Yam P.M.

L-Tyrosine 500 mg.s P.M.

L-Glutamine 500 mg.s P.M.

Lutein 20 mg.s P.M.

Magnesium 200 mg.s P.M.

Selenium P.M.

Garlic Standardized P.M.

Black Cohosh Standardized P.M.

Zinc 50 mg.s A.M./P.M.

This is what I take, and this is the list I give to my doctor.

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Jesus thats alot

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Who advised you to take all these supplements .....

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I have Celiac Disease, Juvenile Diabetes and Hypothyroid, for 46 years. I read a lot and I keep up on the latest news for all 3 of these conditions. Expressly I would recommend reading. Prescriptions for Nutritional Healing by Phyllis Balch. Though again I have to say, some brilliant person here on this site, suggested Iron supplements to help my Nature-Thyroid work properly.

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Tell me do you take your nature thyroid first thing in morning

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Do you take your np thyroid first thing in morning on empty stomach

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Right after I take my insulin, before I eat anything, first thing in the morning.

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Ok and how soon after do you start taking your supplements

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A.M. about an hour, P.M. right after dinner.

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I had been told not to take any supplements for about four hours after np thyroid

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It only takes 20 minutes for any medication to be absorbed into the human body, although in my case, my Nature-Thyroid won't work if I don't take my insulin shot, and once I've taken my insulin shot, I have about 30 minutes to 45 minutes to eat something.

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What dose iron do you take....is it just iron or a multivitamin with iron

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What dose iron do you take

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What dose iron do you take and do you take Amy other vitamins

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Look at the research that shows taking levothyroxine with vitamin C improves uptake

healthunlocked.com/thyroidu...

ncbi.nlm.nih.gov/pubmed/246...

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Your endocrinologist is saying your thyroid hormone is not being absorbed. We need to verify this. A high TSH could be because the hormone is not being absorbed, it could also be a TSH assay error. If you have your fT3 and fT4 results please post them here, if not ask your endocrinologist for them. How do you feel at the moment? What symptoms do you have, if any? Need to see at least the fT4 level from when you were on Eltroxin before you can assume there is poor absorption and worry about possible causes.

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I think this is the best advice here. You've come across a big discrepency - you're taking a substantial hormone replacement dose (150 Eltroxin), and have had a very high TSH (128). Usually you would only get a TSH this high after a thyroidectomy while taking zero or minimal replacement.

This is very out of the ordinary and means many of the usual routes of investigation aren't so relevant -you want to find the underlying health condition this points to.

There are a few possible explanations for this discrepancy (springs to my mind a pituitary tumour that's pumping out TSH with no connection to how much thyroid hormone is in your blood, or thyroid hormone resistance which means replacent tablets in the conventional way will not raise levels. There may be others I haven't come across).

The first step is to get more information about the discrepancy you've got. FreeT4 definitely and ideally freeT3 too will tell you if this TSH result is reflecting the hormone level in your blood stream. And also of course a retest of the TSH to confirm this is not simply an error.

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My t4 is 8.8 and t3 is 3.5

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Hi Clode41, do you have ranges for these numbers? They should be in brackets after your own number. Just based on what the rangers usually are these look low. I suspect the freeT4 is well below range, and the freeT3 looks like the very bottom of the range.

I've looked up the results I had with similarly high TSH, and here are

1 grain Naturethroid

TSH: >100mIU/L(.27-4.2)

FreeT4: 5.6 pmol/L(12 - 22)

FreeT3: 2.4 pmol/L (3.1-6.8)

1.5 grain Naturethroid

TSH: 50 (0.3 - 6)

FreeT4: 9.2 (10 - 22)

FreeT3: 3.4 (3.6 - 6.4)

Based on mine your set of results don't look too inconsistent. Unfortunately my TSH result only shows >100, so we don't know if it's as high or higher than your result. Your TSH is a bit higher than mine given the freeT4 and freeT3, but I don't know if it's a meaningful amount, my guess would be that its not significant.

So we've answered the first question: Is your complete thyroid panel consistent, or is the TSH out of step with the amount of hormone in the blood stream?

I think the next question is whether these numbers are consistent with the dose you're taking, or if the dose isn't getting through. These blood numbers represent being extremely underdosed, so you'd expect the dose to be very low. I'm not sure how Eltroxin relates to the kind of doses I was taking above, but I'll look it up for you.

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So do you think my dose from 90 np thyroid needs to be increased

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Are these test results from being on 90 of Acella NP?

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Yes

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Acella NP thyroid 90mcg is the same as 1.5 grain. So if this is what you were taking with the above results this is the same dose I was on in the example results I showed you above! The one where my TSH was 50.

So assuming your blood tests were done properly - held on the same dose for 6 weeks, no meds taken in the 24hr before test, test first thing in the morning, then you're actually doing very similarly to me.

On the 1.5grain your freeT3 and freeT4 are almost identical, one a little higher, one a little lower, and your TSH is a fair bit higher, but really only the next step up.

I suspect your tests weren't conducted perfectly, and this might be a reason your TSH came out a little high.

These results are a tiny bit off from mine, but I don't think it's enough to think there's anything additional wrong. You're just on a pretty small dose of hormone replacement.

You definitely need an increase, and you will probably need many many increases to get you to a full replacement dose!

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Although I say these are similar to mine so no explanation needed - I suspect that I have thyroid hormone resistance. I've been very ill and largely bed bound, and am now starting to feel a bit better on 6 grain, which is a high dose, but feel I will need even more to really get out and about. I'm currently still in bed a lot, and can walk round the block but not much more.

So we may just both be in the same boat and have something a bit squiffy. But they first step for you is definitely to keep raising the dose until your blood tests look good - which means freeT3 in the top third of the range. You will definitely feel a lot of improvement, and may find that you're completely fine once you get to that point.

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My dose has been increased and now have to have a brain scan done and an endoscopy

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How much is the increase? It's good they're doing investigations, at least you're not just being sent home to cope with it :p

But the most important thing is to insist they give you regular blood tests and regular dose increases. Ideally every 6 weeks, until your freeT3 is nice and high.

With NDT the traditional way is to keep raising every few weeks until you start feeling well or get to 3grains-ish and then start having blood tests. But I doubt you will find a doctor to support that. It sounds like your not in the UK. If you're in the US you may be able to find a functional medicine doctor to help you.

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In Ireland

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Hi there I live in Ireland and had thyroidectomy in Jan failed to feel good on Levo now on 100 Levo and 20 t3 and getting more energy. I found a very good endo in Dublin if you are interested. She told me it can take between 12 or 18 months to balance on meds.

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Yes but mine aren't being absorbed at all .... have to have some further investigations. ...brain scan....endoscope

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Very tired....nauseous....shaky....... sore joints and neck

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My free t4 is 8.8 and free t3 is 3.5

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These look low, I assume they are from when you are on NP. Do you have the results from when you were on Eltroxin? I'm not saying Eltroxin is better, rather it is easier to make sense of the numbers. It would also help to know your blood test results and symptoms from just before your thyroidectomy. It's still not clear whether there is an absorption problem, unreliable TSH assay or even genetic resistance to thyroid hormone (RTH) which is quite rare.

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Do you take your thyroid hormone at least one hour away from food and coffee?

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Yes I do

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My tsh levels previously were 36.44 and now 128.

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Try switching to night time for thyroid med

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I did that too but wasn't able to sleep

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Now my gp has said that when I was on eltroxin from May to August....in August my tsh levels were 40.8 .....still incredibly high but then was put on np thyroid and then tsh levels went up to 128. She is now suggesting that I return to eltroxin on a higher dose......what do ye think of that idea guys

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