Hypothyroid : Hi I am new to site Diagnosed... - Thyroid UK

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Hypothyroid

Charli14 profile image
29 Replies

Hi I am new to site

Diagnosed hypothyroid 2012

Feeling awful on 100mcg levothyroxine reduced from 150mcg levothyroxine and before that 150mcg levothyroxine and 12.5mcg T3

Symptoms are tiredness hair loss dry skin muscle cramps bone pain feeling cold

Advice welcome

Thank you

TSH 0.03 (0.27 - 4.20)

Free T4 20.8 (12 - 22)

Free T3 3.9 (3.1 - 6.8)

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Charli14 profile image
Charli14
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29 Replies
greygoose profile image
greygoose

Oh, you do have a conversion problem, don't you. Not surprising you felt better when you were taking T3! T3 is the active hormone, and you have very little of it. Unfortunately, there's a bit of a witch hunt on, at the moment, to stop T3 being prescribed. So, people are having to buy their own.

You could try and find the cause for your bad conversion, though - although there are no guarantees you can change it. Firstly, have you had your antibodies tested? If antibodies are high, it means you have the autoimmune version of hypothyroidism, called Hashi's. Hashi's people are often bad converters, and there's not much you can do about it.

Secondly, it could be due to low nutrients. Have you had your vit d, vit B12, folate and ferritin tested? If not, ask your doctor to test them. :)

Charli14 profile image
Charli14 in reply to greygoose

I think I have Hashis

TPO antibodies 804 (<34)

TG antibodies 256.3 (<115)

Will post vitamins and minerals

greygoose profile image
greygoose in reply to Charli14

Yes, you do have Hashi's. Are you gluten-free?

Charli14 profile image
Charli14 in reply to greygoose

No not gluten free

GP thinks I have coeliac and ordered coeliac panel

greygoose profile image
greygoose in reply to Charli14

OK, but they are notoriously unreliable. And, in any case, won't pick up on gluten sensitivity. So, once the tests are done, I would just try gluten-free to see how you get on with it. Do you feel any better on it? Have your antibodies decreased, etc.?

You could also take selenium, which will not only lower antibodies, but help with conversion, too.

Another reason for bad conversion, is low-calorie diets. You're not on one of them, are you?

Charli14 profile image
Charli14 in reply to greygoose

Thanks

Never tried gluten free

Went through a period of 5 months barely eating anything and antibodies increased but now eating a lot better and gained weight

Not into low calorie diets

greygoose profile image
greygoose in reply to Charli14

Well, that's good anyway! Because you've seen what happens :

You went on a five month binge of not-eating, so your conversion got worse, which made your TSH rise, which made your antibodies rise.

It's all interconnected. :)

SlowDragon profile image
SlowDragonAdministrator in reply to Charli14

Have they given you a date for endoscopy

Blood test is notoriously unreliable (50/50)

Only 5% with Hashimoto's are coeliac, but over 80% find gluten free diet improves symptoms significantly and eventually lowers antibodies

This is due to mix of gluten intolerance, there's no test available on NHS, so just have to try it.

Also with leaky gut this leads to gluten incorrectly crossing from gut into blood stream. Here, due to it looking extremely similar to thyroid molecules it thyroid raises antibodies

Known as molecular mimicry

Read about it on the Amy Myers link in my post below

Also the thyroid pharmacist links

Read as much as possible about Hashimoto's, as you have discovered its very poorly understood

You don't have to have any gut symptoms at all to still benefit

It will also help maintain vitamin levels once you get these improved by supplementing and Levo dose back to where it should be

Avoid ALL soya (including soya lecithin if possible )

Changing to fluoride free toothpaste is good idea too

Charli14 profile image
Charli14 in reply to SlowDragon

Thanks

No date for endoscopy yet

SlowDragon profile image
SlowDragonAdministrator in reply to Charli14

Should be within a certain time frame.

Gluten challenge normally requires 6 weeks on high gluten diet.

SeasideSusie profile image
SeasideSusieRemembering

Charli14 Welcome to the forum. It's pretty obvious from those results that you need your T3 reinstating so now wonder you feel awful. Why was it stopped?

Some of your symptoms are indicative of low nutrient levels. Have you had the following tested, if so please post results, with reference ranges, and say if you are supplementing and what dose. If not ask for them to be tested

Vit D

B12

Folate

Ferritin

Charli14 profile image
Charli14 in reply to SeasideSusie

Stopped due to new endo not supporting its use

Will post vitamin and mineral results now

SeasideSusie profile image
SeasideSusieRemembering in reply to Charli14

Charli14

Stopped due to new endo not supporting its use

We've seen that so many times in posts recently, it really is so incredibly wrong that endo number 1 can prescribe something that makes you feel well, then endo number 2 disagrees and takes it away, despite the evidence.

Just out of interest, what did you say when you were told you would no longer be able to have it? Did you offer the evidence that it helped, did you fight your corner? I'm trying to think what I would do in those circumstances (I self source T3 and doctor doesn't know I add it, and I shall keep it that way). Because I'm to old to care any more (or maybe I'm a bolshy old c*w :D ), I think I would kick up a big stink and if it wasn't reinstated I'd make it know in no uncertain terms that no new doctor is going to undo all the benefits that T3 has given so if it's not reinstated then I'd source my own off the internet.

Charli14 profile image
Charli14 in reply to SeasideSusie

I reiterated how well I felt on it

New endo told me not possible for T3 to have helped at all and wrote in letter to GP I have hypochondriasis

SeasideSusie profile image
SeasideSusieRemembering in reply to Charli14

Damn cheek! Hopefully your GP knows you well enough to ignore that. Did your GP know how well you were doing on T3? If so I would ask to have that removed from my records and wouldn't it be nice if our GPs backed us up in situations like this.

I'm rather glad I get my own T3 and keep quiet!

Charli14 profile image
Charli14 in reply to SeasideSusie

Yes GP aware I was better on T3

SlowDragon profile image
SlowDragonAdministrator in reply to Charli14

That is totally outrageous.

You should report him (I guess it was a male endo) for insulting and derogatory and wholly unsubstantiated view

Definitely ask for this to be removed from your medical records

An endocrinologist is NOT a psychiatrist.

There is increasing good quality research to support the fact we remain hypothyroid on T4 alone.

Charli14 profile image
Charli14 in reply to SlowDragon

Yes male endo

SlowDragon profile image
SlowDragonAdministrator

Your antibodies are high this confirms you have Hashimoto's, (also known as autoimmune thyroid disease). About 90% of hypothyroidism in UK is due to Hashimoto's.

Hashimoto's very often affects the gut, leading to low stomach acid, low vitamin levels and leaky gut.

Low vitamins that affect thyroid are vitamin D, folate, ferritin and B12. Important to test these.

If they are too low they stop Thyroid hormones working.

With Hashimoto's then hidden food intolerances very likely to be causing issues, most common by far is gluten.

Changing to a strictly gluten free diet may help reduce symptoms. Very, very many of us here find it really helps and can slowly lower antibodies.

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

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

chriskresser.com/why-changi...

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

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...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

Probiotics

carolinasthyroidinstitute.c...

Great film definitely shows why just testing TSH is inadequate

drbradshook.com/understandi...

Lastly fight this T3 ban

engage.england.nhs.uk/consu...

Charli14 profile image
Charli14 in reply to SlowDragon

Will post vitamin and mineral results now

Charli14 profile image
Charli14

Vitamin B12 201 (190 - 900) being tested for intrinsic factor antibodies

Folate 2.35 (2.50 - 19.50)

Ferritin 45 (15 - 150) diagnosed iron deficiency

Vitamin D total 63.2 (50 - 75 suboptimal) taking 800iu prescribed to me

SeasideSusie profile image
SeasideSusieRemembering in reply to Charli14

Charli14

Vitamin B12 201 (190 - 900) being tested for intrinsic factor antibodies

Folate 2.35 (2.50 - 19.50)

You should, once testing for Pernicious Anaemia has been done, be given folic acid. Your B12 is low enough that you may need B12 injections. You could post on the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc

**

Ferritin 45 (15 - 150) diagnosed iron deficiency

So what's happening about the iron deficiency? Are your prescribed anything? Here is NICE Clinical Knowledge Summary for iron deficiency anaemia treatment (which will be very similar to your local area guidelines) cks.nice.org.uk/anaemia-iro...

How should I treat iron deficiency anaemia?

•Address underlying causes as necessary (for example treat menorrhagia or stop nonsteroidal anti-inflammatory drugs, if possible).

Treat with oral ferrous sulphate 200 mg tablets two or three times a day.

◦If ferrous sulphate is not tolerated, consider oral ferrous fumarate tablets or ferrous gluconate tablets.

◦Do not wait for investigations to be carried out before prescribing iron supplements.

•If dietary deficiency of iron is thought to be a contributory cause of iron deficiency anaemia, advise the person to maintain an adequate balanced intake of iron-rich foods (for example dark green vegetables, iron-fortified bread, meat, apricots, prunes, and raisins) and consider referral to a dietitian.

• Monitor the person to ensure that there is an adequate response to iron treatment.

Take each iron tablet with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption.

For thyroid hormone to work ferritin needs to be at least 70, preferably half way through range. You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...

**

Vitamin D total 63.2 (50 - 75 suboptimal) taking 800iu prescribed to me

You really need to be taking more than 800iu daily to raise your level, it will take forever and a day with just 800iu. I suggest you buy some D3 softgels like these bodykind.com/productsearch/... and I would take 300-4000iu daily for 3 months then retest. When you've reached the level recommended by the Vit D Council - which is 100-150nmol/L - and then you'll need a maintenance dose which may be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/

There are important cofactors needed when taking D3

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds

naturalnews.com/046401_magn...

Check out the other cofactors too.

Charli14 profile image
Charli14 in reply to SeasideSusie

Thanks

Taking 1 iron tablet for iron deficiency and have iron and complete blood count monitored every 3 months

SeasideSusie profile image
SeasideSusieRemembering in reply to Charli14

Well, the guidelines say 2 or 3 x ferrous fumarate daily. I'd discuss it with your GP.

Charli14 profile image
Charli14 in reply to SeasideSusie

Sorry

Being prescribed folic acid but because of symptoms of B12 I stopped this on advice of GP

SeasideSusie profile image
SeasideSusieRemembering in reply to Charli14

Once all the investigations into B12 deficiency/pernicious anaemia have been carried out, you should be able to restart the folic acid. They will advise you on the PA forum.

SlowDragon profile image
SlowDragonAdministrator in reply to Charli14

GP seems fairly on the ball

anhinternational.org/2013/0...

lcsnow21 profile image
lcsnow21

Just looking for some peace of mind. I have struggled with energy issues for about 5 years. Corrected low ferritin, B12, and D. Used ashwaghanda for adrenals for about a year. Finally was given NDT for subclinical hypothyroidism. I just can't handle it. I tried such a teeny dose... A half a 1/4 grain every other day to start, then everyday. Every time I try to take NDT I get major anxiety, palps, shortness of breath, and just feel manic or something. The place I was going to doesn't like to give T4 only... Very integrative and natural. So I went to a new endocrinologist and they said while they are open minded in regards to NDT they think I am not a good candidate for it and they gave me synthroid. Well after having tried the NDT for 2 months I suddenly switched to the levothyroxine (25mcg). The NDT also had my labs jumping around and even showing some of the worst results ever. Anyway I was fine for a couple days but now that the NDT is out of my system I feel horrible. Completely hypo and dead to the world. Will this subside in a couple weeks? Do I just need to give the levo a chance to work?

mjachade profile image
mjachade

I took myself off of Levythyroxin. My blood pressure skyrocketed and the headaches never stopped.

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