New to community please help x: I feel really... - Thyroid UK

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New to community please help x

Jax02 profile image
42 Replies

I feel really lost. I was diagnosed hypothyroid 2011, have never felt right on any dose of levothyroxine. At the moment I take 25mcg but might as well be none. My symptoms are sweating, dry skin, difficulty swallowing choking fits, hard stools, chest pain, depression, joint aches, heavy periods, fatigue, cold intolerance, puffy eyes that come and go. Advice appreciated x

TSH 5.7 (0.2 - 4.2)

FT4 14.8 (12 - 22)

FT3 3.6 (3.1 - 6.8)

Anti thyroglobulin abs 416 (<115)

Anti thyroid peroxidase abs 98.5 (<34)

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Jax02 profile image
Jax02
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42 Replies
Spareribs profile image
Spareribs

Hi Jax, although your FT4 FT3 are just in range your TSH is shouting to make more hormone, you're right 25mcg is just enough to stop any hormone production & make you feel worse.

What dose were you on and can you tell your GP you felt better on that?

Remember not to take medication before your blood test, else the medication will be measured & not your actual levels. x

Ps don't forget to ask your GP if your vital minerals are at good levels too - iron/ferritin B12/folate & vitamin D - for starters.

Jax02 profile image
Jax02 in reply toSpareribs

25mcg levothyroxine but I feel better on less. I was taking as much as 200mcg levothyroxine x

ShootingStars profile image
ShootingStars in reply toJax02

200 to 25. Very hypothyroid, double trouble with not one but two thyroid antibodies (you have Hashimoto's...), but feeling better with all of those hypo symptoms? How quickly did you go from 200 down to 25? 200 mcg might have had you over medicated, which can give you different symptoms. May I ask what your symptoms and your bloods were when you were up at 200 mcg?

I don't blame you for wanting less than 200 mcg. It would make me really sick, too, or it would kill me (I'm on less than half of that). You're happier on less than 200 mcg because you feel better. I would too!

If you want to get out of hypo and have no symptoms, you'll have to take a whole lot more than 25 mcg to ever get there.

Jax02 profile image
Jax02 in reply toShootingStars

On 200mcg Levo

TSH 1.30 (0.2 - 4.2)

FT4 19.3 (12 - 22)

FT3 3.6 (3.1 - 6.8)

ShootingStars profile image
ShootingStars

Hi Jaz02, Oh my! No wonder you have all those hypo and Hashi's symptoms! You are very under medicated. Did your doctor tell you that you have Hashimoto's? This is based on your high thyroid antibodies, which mean Hashimoto's. Hashioto's is an autoimmune disease where your body is attacking your thyroid. This can cause hypothyroidism, or low thyroid hormones T3 and T4.

25 mcg levo is not the starting dose, 50 mcg is. So your doctor has left you under medicated from the start, which is why you are currently so hypo. How are you taking your thyroid medication? It needs to be taken on a completely empty stomach, either first thing in the morning, or in the evening after having not eaten for ideally 4 hours, which is when the stomach will be empty from the last meal. Thyroid medication is taken with water, but you cannot consume any other beverage or any food for 1 hour. Calcium and iron containing foods or supplements should be taken far apart from your thyroid medication, at least 2 hours, if not 4 after your thyroid medication.

Jax02 profile image
Jax02 in reply toShootingStars

Thanks I feel better on less levothyroxine but I was taking as much as 200mcg levothyroxine x

Marz profile image
Marz

Many people begin to feel better when they are gluten free. This reduces inflammation and enables you to absorb nutrients efficiently. You are under-medicated. Selenium supplements needed too.

So how is your diet ? Any other medication ?

I am suspecting anaemia so please have B12 - Folate - Ferritin - Iron Profile - VitD tested asap. Thyroid meds rarely work well if any of the previous are low.

Jax02 profile image
Jax02 in reply toMarz

Hi I feel better on less levothyroxine. I was taking as much as 200mcg levothyroxine at one time. Diet is mostly nothing all day and I take no other medication. Vitamin and mineral levels checked December 2017. Thanks x

ShootingStars profile image
ShootingStars in reply toJax02

Hi Jax, Hijacks?? :-P Is that a typo...nothing all day? No food? Please tell us more. What do you eat when you eat? 200 mcg, now 25 mcg? Yowsers! Metabolic roller coaster.

I completely agree with Marz on the gluten free, as like many, that has been my experience. Inflammation is the enemy of thyroid disease and especially those with autoimmune diseases like Hashimoto's. At first I didn't believe that hooey. I thought, no way, no me, sounds silly. That's when I took a turn for the worse. I cleaned up my diet, and oh what a difference it made!

Jax02 profile image
Jax02 in reply toShootingStars

No food at all until lunchtime most days

ShootingStars profile image
ShootingStars in reply toJax02

Interesting. Why? That will certainly cause all sorts of problems. You're already very hypo, so low metabolism. No food = even lower metabolism.

Jax02 profile image
Jax02 in reply toShootingStars

It is because whatever I eat my stomach rapidly empties within 5-10 minutes of eating anything

ShootingStars profile image
ShootingStars in reply toJax02

I'm sorry. I don't understand that logic.

Stomach problems like often relate to under medicated hypothyroidism. Some people go between constipation and diarrhea.

Jax02 profile image
Jax02 in reply toShootingStars

I eat or drink something - 5-10 minutes I get bloating and I rush to the toilet and I have rapid emptying constipation

ShootingStars profile image
ShootingStars in reply toJax02

I think you're confused about the difference between diarrhea and constipation. Diarrhea is rapid emptying. Constipation is when nothing is moving.

Jax02 profile image
Jax02 in reply toShootingStars

It is constipation. I don't go for a few days, maybe even a week and when I do it happens after eating or drinking and it comes out hard but I have an urge to go

ShootingStars profile image
ShootingStars in reply toJax02

Yes, that's what happens when you are hypothyroid, don't take the correct dosage of medication to take your FT3 up near 3/4 range and FT4 over 1/2 range. Low thyroid = slow metabolism.

Jax02 profile image
Jax02 in reply toShootingStars

Ok I will up my dose

ShootingStars profile image
ShootingStars in reply toJax02

Hold on. How much are you planning on increasing your dose?

Jax02 profile image
Jax02 in reply toShootingStars

25mcg to 50mcg for 3 weeks, then to 75mcg after I have been on 50mcg for 3 weeks

sunsetalley profile image
sunsetalley

Your TSH is too high, it should be 1 or lower...That's why you still have all symptoms of hypothyroidism...

Jax02 profile image
Jax02 in reply tosunsetalley

I feel better on less. I was taking as much as 200mcg levothyroxine x

doreeng profile image
doreeng

Hi Jax, I am following this closely as i, too, am on 25mg of levo, and am still suffering the same symptoms as you, but minus the heavy periods as I am 64. I just moved to a new home, so have just moved medical practice. I will follow your posts with interest to see what happens. I believe my rose should be higher...then I might feel better and lose some of these debilitating symptoms. Good luck!

silverfox7 profile image
silverfox7 in reply todoreeng

How long have you been on that dose? You should have been told to get bloods done again after 6 weeks (it takes that length on time to get a new dose fully into your system) if it's long than that I would go to your new doctor and tell him you were supposed to have been retested at the right time so could he please so it now?! Before you do that though this forum is recommended by NHS Choices for dysfunction of the thyroid gland and is run by Thyroid Uk do look at there web site and read their excellent advice and print off any thing relevant to show to your doctor.

ShootingStars profile image
ShootingStars in reply todoreeng

Oh no, not you, too doreeng! You are under medicated if you are still suffering. 25 mcg is not even the usual starting dose, 50 mcg is. If properly medicated, you will have little or no symptoms at all.

SlowDragon profile image
SlowDragonAdministrator

As the others have said, you are very under medicated. See your GP and get dose increased by 25mcgs.

You need to take exactly same dose EVERYDAY for 6-8 weeks and then have new blood test. Dose should be increased in 25mcg steps, retesting 6-8 weeks after each increase, until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's

Essential to test vitamin D, folate, ferritin and B12.

Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels can really affect things badly and affect Thyroid hormone working. It's essential to get vitamin levels optimal.

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

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)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first along with vitamin tests above

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

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

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

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

thyroidpharmacist.com/artic...

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

HLAB35 profile image
HLAB35

It's not surprising that you're feeling ill. You are ill and your doctor is negligent. B12 and iron deficiency is the result of under treatment. As you have an autoimmume illness it's essential to understand that you won't improve without taking on the inflammation. Inflammation, is now understood (Radio 4, Monday) to cause depression. Therefore, Omega 3, Vitamins A, D, K and E, Zinc, Magnesium, Selenium and Vit C could all help. Diet is the best way to achieve this. Gluten and Dairy can trigger antibodies so many avoid either.

Jax02 profile image
Jax02 in reply toHLAB35

Thanks. I feel better on less. I was taking as much as 200mcg levothyroxine at one time x

SlowDragon profile image
SlowDragonAdministrator in reply toJax02

What were results then on 200mcg.

Jax02 profile image
Jax02 in reply toSlowDragon

TSH 1.20 (0.2 - 4.2)

FT4 19.2 (12 - 22)

FT3 3.8 (3.1 - 6.8)

SlowDragon profile image
SlowDragonAdministrator in reply toJax02

Well these show you had very low FT3.

Like many with Hashimoto's, you probably had low vitamin levels. Essential to test vitamin D, folate, ferritin and B12 at least once a year and supplement, often continually to improve and keep optimal

Gluten intolerance is extremely common and likely need to be strictly gluten free.

Ask GP for coeliac blood test before changing to strictly gluten free diet for minimum of 3-6 months. If it helps stick on it.

Dose of Levo will need increasing back up in 25mcg steps, retesting 6-8 weeks after each dose increase. Increasing until TSH is around one and FT4 towards top of range

Supplementing vitamins to keep these optimal and gluten free

If FT3 remains low then, like many of us with Hashimoto's, you may need addition of small dose of T3

You might consider getting DIO2 gene test too.

thyroiduk.org.uk/tuk/testin...

ShootingStars profile image
ShootingStars in reply toJax02

No wonder you felt bad with those levels. You were under medicated here, too. Your FT3 is very low, as SlowDragon says. I felt horrible with low FT3 too. That's why I take T3 and T4.

If you FT3 was closer to where it should be, you'd have felt much better. With Hashimoto's, you want to be amply medicated to help take some strain off your thyroid. It's got double trouble because it's doesn't just have a hypo problem. It also has an autoimmune attack problem. Properly medicated Hashi's people tend to have TSH under 1.0, closer to 0.50, or even under 0.50. Mine is well below 0.50. As a result of nicely suppressed TSH, your FT3 and FT4 should be up over 1/2 range but not much over 3/4 (too high leads to other symptoms).

HLAB35 profile image
HLAB35 in reply toJax02

Firstly, has anyone suggested an alternative to Levo or the brand you've been on - it's unlikely, but they must have noticed you have low T3. You were not converting properly on 200mcg, nor are you converting any better on 25mcg, so I can see why there's a problem. You could have a genetic conversion issue which could be tested (it's the D102 gene)

healthunlocked.com/thyroidu...

, or you're not converting properly due to very high antibody levels / not enough co-factors for conversion. To reduce antibodies you could take selenium and cut out gluten and reduce sugar (as it promotes inflammation) and reduce the amount of stress / intense exercise you do. To aid conversion you need good levels of iron and vitamin d at the very least. If nobody is offering you a complete thyroid panel to include b12, folate ferritin and vit d then chase it up and post your results here.

ShootingStars profile image
ShootingStars in reply toHLAB35

I agree! Thyroid antibodies often interfere with converting T4 to T3. Not converting well is very a very common problem found in Hashi's.

Jax02 profile image
Jax02 in reply toHLAB35

I have new vitamin levels and have had low FT3 since diagnosis

ShootingStars profile image
ShootingStars in reply toJax02

You already had almost nonexistent FT3 in both the labs you already posted. Both were at the bottom of the range. FT3 should be up near 3/4 range, which is 5.875. You were miles away with 3.6 and 3.8.

Do you mean your FT3 is now below bottom range?

Jax02 profile image
Jax02 in reply toShootingStars

Yes

ShootingStars profile image
ShootingStars in reply toJax02

Why are you allowing this? Do all those symptoms bother you or cause any concern?

This is not at all surprising, since you are not on correct medication.

Jax02 profile image
Jax02 in reply toShootingStars

I tried speaking to my doctor and endo about my FT3 and they just say it's irrelevant, my symptoms are causing me concern and I need to go back and insist on treatment

ShootingStars profile image
ShootingStars in reply toJax02

Yes, we understand and would feel that way too. But.....you are extremely hypo, have autoimmune thyroid disease Hashimoto's, and you still have all sorts of symptoms that you listed.

Jax02 profile image
Jax02 in reply toShootingStars

I am seeing GP in 2 weeks

silverfox7 profile image
silverfox7

I would get your vitamins and minerals optimal first. It makes a huge difference! The Fab Four, Vit D, B12, folate and ferritin help the Thyroid work better and.can reverse a bad conversion rate, I've done that myself, plus they can get rid on other symptoms as well so really a win win situation!

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