On no Levothyroxine advice please

[Bree85]

Hi my thyroid tests are currently undermedicated is it ok to start back on levo due to symptoms of hard stool, tiredness, headaches? I was diagnosed hypo in 2011. Thank you

DEC 17

TSH 4.80 (0.2 - 4.2)

FT4 14.9 (12 - 22)

FT3 3.2 (3.1 - 6.8)

[SeasideSusie Remembering]

Start back on Levo? Why aren't you taking it?

[Bree85 in reply to SeasideSusie]

Endo not happy with where levels were, was taking 175mcg levo before - been advised to start again

[Nanaedake in reply to Bree85]

What was the result that made Endo tell you to stop taking levo?

[Bree85 in reply to Nanaedake]

TSH 0.03 (0.2 - 4.2)

FT4 21.3 (12 - 22)

FT3 4.1 (3.1 - 6.8)

[Nanaedake in reply to Bree85]

Hello Bree85. As you can see your FT4 and FT3 were in range and in fact your FT3 was lowish in range. If you were overmedicated then your FT3 would be over the top of the lab range. The top of the lab range in your case is 6.8 so your FT3 would need to be greater than 6.8 to indicate overmedication.

Your Endo is dosing by the TSH. TSH is a pituitary hormone. If we have sufficient thyroid replacement then ithe pituitary gland doesn't need to signal the thyroid gland to produce more hormone so TSH is likely to be undetectable or low as yours was.

If someone does not have thyroid disease and is healthy then their pituitary gland has to keep signalling to keep a steady flow of thyroid hormone releasing from the thyroid. But since our hormone comes from a tablet rather than our gland then we don't need our pituitary gland to keep signalling our thyroid to get to work. At least that's my non-scientific understanding of our hormonal replacement.

I've seen a lot of people on this forum say their Endo has reduced their meds and then their thyroid becomes unstable and levels fluctuate making it difficult to maintain stability which is critical for us to feel well. We also need enough FT3 to feel well.

Your Endo doesnt' understand thyroid hormone. Probably a diabetic specialist - Google to find out. In any case, he's making you ill as you are now undermedicated and will have to start all over again at 50cg and increasing your dose by 25mcg at a time with blood tests every 6 weeks until you reach a TSH of around 1 or a little lower.

If your GP is more helpful then I'd visit GP and get your levo restored and then just stick with this forum for advice.

[Bree85 in reply to Nanaedake]

I am going to GP tomorrow and telling them what has happened

[Saggyuk in reply to Bree85]

Did the endo tell you to stop taking them completely? When did you stop taking them?

[Bree85 in reply to Saggyuk]

Yes the endo told me to stop them completely in September 2017

[Saggyuk in reply to Bree85]

September!!! You're likely much worse than shown in the tests in December too.

I don't understand why I keep seeing the same thing - it doesn't even make sense to do this - your results were hardly shocking. Even if he felt it too high, surely just dropping 25mcg would be the normal thing to do. - Total idiot!!!

Basically you need to not listen to this stupid uneducated doctor ever again- he wants to kill you!

Grrrrrrrr!!!!!

You need another blood test asap, need to get back on meds immediately and make a complaint!

[Bree85 in reply to Saggyuk]

GP has asked me to restart my levothyroxine but I am worried about the palpitations I get and my weight loss

[Saggyuk in reply to Bree85]

This is likely due to being very hypothyroid.

If you had palpitations before you reduced your dose, then they are likely due to deficiencies as most of us are deficient - especially when undermedicated - so get your Ferritin, Folate, Vit D and Vit B12 tested and come back with the results.

If GP won't test, then you can pay to get them done privately for a reasonable cost.

[Bree85 in reply to Saggyuk]

Ferritin etc I have results for and I supplement

[Saggyuk in reply to Bree85]

post the results and ssupplements then.

In regards to weight loss, you mean you're underweight already?

[Bree85 in reply to Saggyuk]

I was underweight from 2012 - 2016, then gained weight early 2017 - up to now. The weight is now coming off again

[Saggyuk in reply to Bree85]

Just to rule out the simple - are you eating enough calories to maintain weight?

unexplained weightloss can be a sign of stomach or absorption issues - often coeliacs or NCGS as you can't absorb the food you're eating. Many people with thyroid problems have issues with gluten anyway and it can help to lower antibodies so it would be worth trying a gluten free diet to see if you have any improvements in your symptoms but needs to be 100% gluten free for at least 3-6 months to know exactly.

Do you have problems with digestion?

[Bree85 in reply to Saggyuk]

Yes I eat over 2000 calories each day and I have gut issues like diarrhoea but mostly constipation. Also feeling sick and empty

[Saggyuk in reply to Bree85]

Okay, well if your nutrient levels are low (am assuming so as you're supplementing), have diarrhoea and constipation, are autoimmune and have unexplained weightloss, these are the classic signs of coeliacs - has no one tested you for this?

The blood test is unreliable though so need a biopsy to rule out but even the biopsy doesn't rule out NCGS.

Ask your GP for coeliac testing before you go gluten free.

There are a few other issues that can cause similar problems but coeliacs is the most likely. If tests come back negative, you can try Gluten free anyway and if there's still no improvements, you can ask for a referral to a specialist to figure out what's going on there

[Bree85 in reply to Saggyuk]

Never checked for coeliac

[Saggyuk in reply to Bree85]

Yes I imagine - most of them can't link more than one piece of information together lol!!!!!

[Saggyuk in reply to Saggyuk]

Just saw your nutritional levels - you literally have every classic and typical sign for coeliacs so still cannot believe they never once thought to test you!!!! The fact they don't even bother to look more into why you seem to be absorbing zilch on 2000 calories a day - just beyond me!!

[Bree85 in reply to Saggyuk]

Will ask to be tested, next appointment is on my birthday in 3 weeks

[Saggyuk in reply to Bree85]

Don't take no for an answer! Switch to another doc if necessary

[whispers60 in reply to Bree85]

You can ask your gp at your appointment today to he tested for cowlick never mind waiting to see the endoscopy in three weeks ( if that's who you're seeing in 3 weeks

[whispers60 in reply to whispers60]

Cowlick? Bloody phone, as though I'm not confused enough 😂

[SeasideSusie Remembering in reply to Bree85]

Oh for goodness sake, he's an ****hole. There was absolutely nothing wrong with those levels, FT4 is in range and FT3 is very low in range, you needed T3 added to your Levo.

Dump the endo, preferably in a river and wearing lead boots (ohhh, I'm so mad at what I'm reading tonight about what these stupid endos are doing to patients!).

Your endo is undoubtedly a diabetes specialist (most of them are) who hasn't got a clue about hypothyroidism or how to treat it.

What has your GP said?

If you wish to continue seeing an endo then ask your GP to refer you to another one, get the list of thyroid friendly endos from Dionne at [e-mail] then ask for feedback from members on any you can get to.

Have you had thyroid antibodies tested (I have a suspicion that they might be raised and you have autoimmune thyroiditis aka Hashimoto's)?

Have you had vitamins and minerals tested - Vit D, B12, Folate, Ferritin?

Have you ever had T3 prescribed and then taken away?

[Bree85 in reply to SeasideSusie]

GP wants me to restart levothyroxine and I have TPO antibodies of 573 (<34) and TG antibodies of 268.3 (<115) never had T3 before and will post vitamin levels now

[Nanaedake in reply to Bree85]

Take your GP's advice. My heart went crazy when undermedicated.

[MiniMum97 in reply to Nanaedake]

Hi @Nanaedake when you say your heart went crazy, what was happening. I have been getting palpitations and pounding heart with peaks in my resting heart rate since Christmas. Don’t think it’s overmedication though I think I am slightly under medicated. Would be interested in your experience. Thank you!

[Nanaedake in reply to MiniMum97]

I'll PM you MiniMum97, don't want to hijack post.

[Kalicocat in reply to Nanaedake]

I'm interested as well, because I'm getting a holtometer tomorrow due to long runs of palpitations, heart pounding, increased heart rate, slow heart rate, you name it, I have it. Been terrified. My FT3 was below normal on the 18th of January, I've been on a increased dose for a week now. Today has been the first day that my heart feels relatively normal. Can you PM me too?

[Bree85 in reply to Kalicocat]

Maybe start your own thread regarding this if not responding to me? Else I will be deleting this thread and leaving the group if people continue to hijack my post. Thanks

[SeasideSusie Remembering in reply to Bree85]

So your raised antibodies confirm autoimmune thyroiditis and this is why your endo doesn't understand your results and why he's messing you around.

I would ditch the endo and stay with your GP. Start back on your Levo, maybe at 50mcg and raise by 25mcg every 6-8 weeks after testing levels. Aim for a TSH of 1 or below and free Ts in the upper part of the reference range if that is where you feel well.

Hashi's is where antibodies attack the thyroid and gradually destory it, it causes fluctuations in symptoms and test results, so be aware that sometimes adjusting doses is necessary if you have a "Hashi's flare" which can give hyper-type symptoms temporarily, things will settle down again so readjust dose as and when.

Read, learn and help yourself where Hashi's is concerned, and maybe you can discuss it with your GP when you feel confident that you understand it. Get him on board if possible and hopefully he will work with you.

You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...

Hashi's and gut/absorption problems tend to go hand in hand and very often low nutrient levels or deficiencies are the result. I wouldn't be surprised if yours are low.

[Bree85 in reply to SeasideSusie]

I supplement with the following:

Dec 2017

Ferritin 57 (15 - 150) taking 1 iron tablet on prescription since Feb 2017

Folate 2.3 (2.5 - 19.5)

Vitamin B12 341 (190 - 900)

B12 injections given once every 3 months for low B12 symptoms, started Aug 2017

Vitamin D 55.2 (50 - 75 suboptimal advise on safe sun exposure and diet) taking 800iu on prescription since 2013

[SeasideSusie Remembering in reply to Bree85]

Ferritin 57 (15 - 150) taking 1 iron tablet on prescription since Feb 2017

Ferritin needs to be at least 70 for thyroid hormone to work. In addition to your iron tablet start 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...

Take each iron tablet with 1000mg Vit C to aid absorption and help prevent constipation, and take iron 4 hours away from thyroid hormone and 2 hours away from other medication and supplements as it affects absorption.

**

Vitamin B12 341 (190 - 900)

B12 injections given once every 3 months for low B12 symptoms, started Aug 2017

Your B12 is very low for someone having injections. Was that test done when you were due one? You can top up between injections if you feel the need, either sublingual methylcobalamin or self injecting B12 - the Pernicious Anaemia Society can help with the injections healthunlocked.com/pasoc

Folate 2.3 (2.5 - 19.5)

B12 and folate work together.

You must speak to your GP about this. You are folate deficient.

You should be prescribed folic acid and folate is best at least half way through it's range (whatever your GP says!).

**

Vitamin D 55.2 (50 - 75 suboptimal advise on safe sun exposure and diet) taking 800iu on prescription since 2013

Has it not occurred to your GP (or you) that over 4 years of supplementing with D3 and you're level is still sub-optimal? 800iu D3 isn't going to ever raise your level. It is hardly a maintenance dose for someone with a reasonable level.

If your level was below 30 originally you should have been given loading doses.

What you actually need is far more than 800iu. As you have Hashi's then you should use an oral spray like BetterYou which you will have to buy yourself. I suggest you buy the 3000iu dose spray and double dose for maybe 6-8 weeks (6000iu) then drop down to 3000iu for another month then retest.

The Vit D Council recommends a level of 100-150nmol/L so when you reach this level you will need to find your maintenance dose, it may be 2000iu, maybe more, maybe less, it's trial and error.

Your doctor wont know, because they are not taught nutrition, but 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 helps D3 to work and 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.

[Bree85 in reply to SeasideSusie]

The B12 was taken after the injection, I have told the GP my haematologist wanted my vit D over 75 and the GP told me to go outside and get some sun. But I am photosensitive to the sun

[SeasideSusie Remembering in reply to Bree85]

Just buy your own D3 as suggested.

If you feel the need to top up between injections, either self inject with advice from the PA forum or buy some sublingual methylcobalamin as suggested.

[Angel_of_the_North in reply to Bree85]

How are you supposed to get sun between October and April? When your vit D is decent you might find that you are no longer sensitive to the sun, but you also need decent levels of fatty acids.

[Bree85 in reply to SeasideSusie]

Will be asking GP to check me for coeliac as I have diarrhoea mixed with constipation

[SeasideSusie Remembering in reply to Bree85]

In that case delay starting a gluten free diet as you will need to do a gluten challenge if being tested for coeliac.

[LaShell]

When I had this same problem/symptom my endo had me start taking magnesium (400 mg) and a stool softener (250 mg) a day. This took care of the problem. I eventually was able to stop taking the stool softener, but kept taking the magnesium (but at a lower dose of just 200 mg per. day). Drinking lots of water helps as well.

[Bree85 in reply to LaShell]

Drinking more water makes my constipation worse. Thanks

[SlowDragon Administrator]

Run away from endo. They don't have a clue probably yet another Diabetes specialist who doesn't understand Hashimoto's

You were NOT over medicated on 175mcg, you had low FT3 and almost certainly low vitamin levels as result of Hashimoto's

Your GP seems more clued up

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

Low vitamin levels affect 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)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

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

Ask GP for coeliac blood test first

Persistent low vitamins with supplements suggests coeliac disease or gluten intolerance

gluten.org/resources/health...

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...

thyroidpharmacist.com/artic...

[silverfox7]

Don't go back to that Endo! To me your resultsshow you have a problem with conversion i.e. Converting the T4 you are taking into the T3 everyone of our cells need. The most common reason for this is low nutrients which is often found when hypothyroid so we need to supplement Vit D, B12, folate and ferritin. SeasideSusie has already given her excellent advice on that and given time your reading will improve, FT4 probably fall a little and FT3 will rise. It does take time though, it took me 5 months but I was slowly improving over that time and of course the time depends on how low you are. Never stop nutrients, you will always need them or may be find a maintenance dose to keep them at a good level. One this is done there is still i possibility you may then benifit from a dose change but time will tell on that one.