Advice needed re Hashimotos.: Hi, I would love... - Thyroid UK

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Advice needed re Hashimotos.

Artist23 profile image
13 Replies

Hi,

I would love to understand more about my thyroid. I’ve been on Levothyroxine since diagnosis some 20 years ago. It’s crept up to 175mcg last week. Here are my latest bloods from my GP.

TSH 2.71

Free t4 14

Ferritin 84

Folic Acid 15.5

Vitamin D 95

I am on b12 injections and supplementing with folic acid, vit D, ferrous sulphate, vitamin C, B complex, fish oil, magnesium.

I’m gluten free now, no caffeine, no alcohol and a non smoker. Not much sugar and try to eat clean food. Could always do better but trying my best.

I still feel awful. Piling on the pounds. Hard to do even gentle exercise, breathless, dry itchy crawling skin, muscle and joint aches. Low back ache is awful and can’t stand for long. I have a rowing machine and aim for 20 minutes a day.

I think the palpitations have reduced since upping to 175mcg.

If anyone is knowledgable about genes, I can confirm, through my own digging around in my DNA, that I have these mutations:

Rs1801133 AG

rs1801131 TG

rs17606253 TT

Rs11206244 TC

Rs2235544 AC

The top two are, I believe, the DIO1 and DIO2

The third one possibly t4-t3 conversion

The bottom two to do with decreased thyroid hormone metabolism in tissues.

I have no idea what these mean or what the letters mean. Any help would be so appreciated S I feel like my health is slipping away from me.

thank you.

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SlowDragon profile image
SlowDragonAdministrator

TSH 2.71

Free t4 14

Please add range on Ft4 and folate

Which brand of Levo are you taking

Was test early morning and last dose levothyroxine 24 hours before test

Retest 8 weeks after latest increase in dose levothyroxine

presumably you have Hashimoto’s

Are you also dairy free…..or tried it

Artist23 profile image
Artist23 in reply toSlowDragon

Thanks so much for your reply.

TSH 2.71 [0.35-5]

Free t4 14 [9-20]

Folic Acid 15.5 [2.7-34]

Re brands,,I’m taking a different brand every month. This month is a mix of Accord (150mcg) and Teva 25mcg.

I can confirm it was an early blood test and was 24hrs since last Levo dose.

I do have Hashimotos. Confirmed with antibody test and DNA rs numbers.

I have recently gone gluten free. I do t eat much dairy and willing to try anything at this stage.

Diagnosed 10 months ago with Pernicious Anaemia with a positive Intrinsic Factor Antibody test. On b12 injections.

GP wanted to test me 4 weeks after increase?

greygoose profile image
greygoose

Hi Artist23, welcome to the forum. :)

I'm not surprised you don't feel well with a TSH that high! Not that TSH itself causes symptoms, it doesn't. But it's high because your thyroid hormone levels are too low.

Impossible to tell how low that FT4 is, because you haven't given the range - ranges vary from lab to lab - and they haven't even tested the FT3 (because they don't know what it is!) but I'm guessing (based on the TSH level) that your FT4 is low and that means your FT3 is going to be even lower.

Impossible to tell how well you convert without an FT3 result tested at the same time.

But the strange thing is that you're on quite a decent dose of levo, so why isn't your FT4 higher? How do you take it? On an empty stomach leaving at least an hour before eating or drinking anything other than water? And at least two hours away from other supplements/medication - four hours away from vit D and magnesium? So many things can affect absorption so we have to be careful. :)

Artist23 profile image
Artist23 in reply togreygoose

Hi Greygoose,

Thank you for taking the time to reply. I’m so grateful.

Here are the ranges.

TSH 2.71 [0.35-5]

Free t4 14 [9-20]

Folic Acid 15.5 [2.7-34]

I take my thyroxine as soon as I wake up, with water. I wait an hour before eating breakfast and then take 10k iu of vitamin D, B complex and 5mg folic acid.

I never miss a dose.

I haven’t felt well for years. I just really want to get to the bottom of things.

I could try changing the time I take my vitamin D. I tend to take magnesium later in the day.

greygoose profile image
greygoose in reply toArtist23

Free t4 14 [9-20] 45.45% through the range

So, your FT4 is too low, which will mean your FT3 is lower, so that's why your TSH is high.

There should be a gap of at least four hours between thyroid hormone and vit D, so that could be affecting your absorption of levo. Good idea to try taking it later.

For the B complex it should be about two hours. Which B complex are you taking? Because if it's a good one with 400 mcg methylfolate, you don't need to take the folic acid as well.

Artist23 profile image
Artist23 in reply togreygoose

I take Boots own brand. It’s got methylcobalamin in it - 25uh

I had no idea about the vitamin D. Why don’t the GP’s advise patients of this?

I have had to endure an 18 month ordeal to educate GP’s on pernicious anaemia and to be frank, been really mistreated. I can’t believe I’m heading for the same with my thyroid. I’ve been waiting 18 months to see an endocrinologist and found out that they cancelled the referral in September and I’m not even in the system now!

So grateful for your advice.

greygoose profile image
greygoose in reply toArtist23

I had no idea about the vitamin D. Why don’t the GP’s advise patients of this?

Because they don't know. They know nothing about nutrition because they don't do it in med school.

I take Boots own brand. It’s got methylcobalamin in it - 25uh

Do you mean 25 µg? That's the same as 25 mcg. Are you still having B12 injections?

But what about the folate? Does the Boots' own brand contain methylfolate? How much? Folic acid is probably not doing you any good at all.

Artist23 profile image
Artist23 in reply togreygoose

I hear you. They know next to nothing about B12 either.

Yes I did mean the symbol you typed. Can’t find that on my keyboard.

Sorry, I read the wrong ingredients from the tub. No methyl folate, just folic acid. 200 uh (you know what I mean 😊)

If changing the time I take my vitamin D doesn’t work, what next?

I do have gastritis and my stomach is pretty much constantly inflamed. Could this hinder absorbtion of Levothyroxine? If so, what’s the solution?

greygoose profile image
greygoose in reply toArtist23

Well, folic acid isn't the best form of folate. You'd be better off with one that contains methylfolate. Thorne do a good one: Basic B.

Levo isn't absorbed in the stomach so I don't know if gastritis or inflammation would hinder it. But, it does need good levels of stomach to detache the hormone from the pill. It's then absorbed in the gut. So, make sure you have good levels of stomach acid.

Artist23 profile image
Artist23 in reply togreygoose

Thanks for the recommendation for methyl folate.

Re gastritis, I didn’t know that it wasn’t absorbed in the stomach. I do suspect I have low stomach acid though. This could be another possible explanation. I take kefir to help my stomach but acid isn’t something I had considered.

greygoose profile image
greygoose in reply toArtist23

Stomach acid is a very important part of the puzzle. Try the burp test:

drink half a glass (4 ounces) of cold water with a quarter teaspoon of baking soda, on an empty stomach. Then time how long it takes you to burp. If it takes longer than three to five minutes, the theory goes, you don't have enough stomach acid.

Artist23 profile image
Artist23 in reply togreygoose

Ok will do that, thank you 💦🫢

greygoose profile image
greygoose in reply toArtist23

You're welcome. :)

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