Thyroiditis on levo

[Ela499]

Hello all. Has anyone been diagnosed with thyroiditis? Is so, how long was you on levo? When did you start to reduce the dosage before you recovered?

[galathea]

Thyroiditis is inflammation of the thyroid gland. .. this can be caused by a virus, or antibodies causing an attack. some, or all of the thyroid may be destroyed, imparing its ability to make thyroid hormones. In this case you would remain on replacement hormones for life.

My own thyroid was destroyed by autoimmune thyroiditus. ( Hashimotoes disease) and i have now been taking thyroid repkacement for over 30 years.

What medication have you been given?

[Ela499 in reply to galathea]

Hello. Thank you for your response. I my second child in July. Around October I felt not right so bloods was done and I was hyper. They said to wait a little longer as hopefully it will stable like with my 1st child. Around Dec symptoms changed and I went hypo. My last tests done Jan and they where as bellow. Sow endo and he put me on 50mg levo around Feb. I done tests again on march shown bellow. My tsh receptor antibody was <0.3 Ul/l range (0-0.09)

Anti thyroid peroxide >1022 iu/ml (range <9)

24 Jan 2020

Tsh level 20.50 (range 0.3-5)

T4 8.4 (Range 7.9-16) in range

T3 5.4 (range 3.8-6.0) in range

March 11 2020

Tsh 4.89 range 0.3-5

T4 15.1 range 7.9-16

T3 5.7 range 3.8-6

[galathea in reply to Ela499]

Ah! The high anti thyroid peroxide shows that you most likely have hashimotos thyroiditis. The speeded up part fits as before it is overwhelmed the thyroid can release extra hormones. This hapoened to me, i went very thin, which was great, but felt dreadful, which wasnt so great.

Ideally on medication you woukd expect your tsh to be 1 or under and your free t3 and t4 in the upper part if the range.

Currently T4 and t3 not too bad but your tsh of 4.89 shows that your thyroid is being driven hard to make hormones.

Unfortunately the antibodies wont go away - not until your thyroid is destroyed. This can take years.

You need to return to your doctor every 6 months for testing. The aim is to keep your free t3 and free t4 in the top end of the range. Eventually you will find a dose that keeps you stable.

X

[Ela499 in reply to galathea]

Wow you know so much. Better then my gp. I am not sure what to do if I should increase an extra 25mg? I am still feeling quite crap and have symptoms for hypo. My weight just does not move no matter what I do. I am actually a celiac so all I have is fresh food. The problem I have now is no answers form my gp apart from him suggesting to drop me to 25mg and see if they thyroids start to function themselves as that’s what the endo plan was. To go on 50mg then drop it to 25 once I get my tsh in range. I was supposed to be contacts months ago by endo but that’s no happening even without the virus issue. So don’t know what to do or turn. Endo and the radiologist keep saying it’s all symptoms of childbirth and not graves hashi

X.

[greygoose in reply to Ela499]

The problem I have now is no answers form my gp apart from him suggesting to drop me to 25mg and see if they thyroids start to function themselves as that’s what the endo plan was.

Not going to happen! Shameful that an endo knows so little about thyroid! If you drop the dose the TSH is just going to rise again. Here is a brief run-down of how Hashi's works:

OK, so Hashi's is an autoimmune disease, where the immune system attacks and slowly destroys the thyroid. It is diagnosed by testing Thyroid Peroxidase (TPO) antibodies and Thyroglobulin (Tg) antibodies.

Contrary to popular belief, it is not the TPO/Tg antibodies themselves that attack the thyroid:

"When lymphocytes infiltrate the thyroid gland, mistakenly taking it for a foreign bacteria invader, they damage the thyroid gland and release thyroid peroxidase &/or thyroglobulin into the blood stream. These don't belong outside of the thyroid gland so antibodies are developed to mop them up.

The antibodies are a result of the attack on the thyroid gland, the antibodies don't cause the attack."

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

After every immune system attack on the thyroid, the dying cells release their stock of thyroid hormone into the blood stream, causing the levels of the Frees to shoot up - FT4 to around 30 something, FT3 around 11/12 - and the TSH therefore drops to suppressed.

There is no knowing how long these high levels will persist, but eventually, they will drop by themselves as the excess hormone is used up or excreted, and not only will you become hypo again, but slightly more hypo than before, because there is now less thyroid to make hormone.

(NB: A Hashi's 'hyper' swing is not true hyperthyroidism in that your thyroid is over-producing thyroid hormone. It's physically impossible to 'go hyper' if you are basically hypo. The thyroid cannot regenerate itself to the point of over production of hormones - or even normal production. Very few doctors appear to know that.)

Therefore, it's very important that your doctor does not reduce your prescription, because you’re going to need it again! If you start to feel over-medicated at that point - some do, some don't - the best thing is to stop levo for a few days, then, when you feel hypo again, start taking it again. It's very important to know one's body, and how it reacts.

There is no cure for Hashi's - which is probably one of the reasons that doctors ignore it - apart from the fact that they know nothing about it, of course!

However, between the 'hyper' swing, and the descent back into hypothyroidism, there can be a phase - quite a long one, sometimes - of normality, where the person is neither hypo nor 'hyper'. This is where people sometimes start talking of having 'cured' their Hashi's, by whatever means. But, it doesn't last. Eventually, you will go hypo again.

But, there are things the patient can do for him/herself to help them feel a bit better:

a) adopt a 100% gluten-free diet. Hashi's people are often sensitive to gluten, even if they don't have Coeliac disease, so stopping it can make them feel much better. Worth a try. Some say that going gluten-free will reduce antibodies – I’ve never seen conclusive proof of that, but, you should be aware that even if you were to get rid of the antibodies completely, you would still have Hashi's, because the antibodies are not the disease. It is not the TPO/Tg antibodies that do the attacking.

b) take selenium. This is not only reputed to reduce antibodies, but can also help with conversion of T4 to T3 - something that Hashi's people often find difficult.

c) the best way to even out the swings from hypo to 'hyper' (often called Hashi's Flares, but that doesn't really sum up the way it works) is to keep the TSH suppressed. This is difficult because doctors are terrified of a suppressed TSH, for various false reasons, and because they don't understand the workings of Hashi's. But, TSH - Thyroid Stimulating Hormone (a pituitary hormone) - tries to stimulate the thyroid to make more hormone, which also stimulates the immune system to attack. So, the less gland activity there is, the less immune system activity there will be, meaning less attacks, gland destruction slowed down and less swinging from hypo to hyper and back.

You obviously do need an increase to 75 mcg. That should have been done six weeks after you started the 50 mcg, because 50 mcg is just a starter dose. But, if you give yourself an increase of 25 mcg, you're going to run out of pills before you get your next prescription. You really need to contact your doctor - either GP or endo - and explain the situation. And, ask for a telephone appointment if not a face-to-face.

[Ela499 in reply to greygoose]

Hello. Thank you for such an in-depth explanation :-).

It does make sense everything your saying. I am actually a celiac and have been for around two years now as actually after my 1 child I was extremely ill. I had a horrible bacteria in my stomach for around 1 year and my vitamins (d, folic, iron) all had dropped extremely bad. Then celiac was picked up again with actually acid in my stomach. Before that I was so I’ll that my tonsils kept getting infected and had to be surgically removed. So been through hell for sure.

Will speak to gp and put pressure on them to put me on 75mg. I’ve actually got a few packs of 25mg but different make (teva). So don’t know if that would make a difference. I will purchase some selenium. Is there a particular dosage?

Thank you

[galathea in reply to Ela499]

200mcg per day of selenium. (Usually 1 tablet)

[greygoose in reply to Ela499]

A lot of people find that Teva does not agree with them. Have you taken it before? If you're ok on it, and ok on the 50 mcg brand, then taking two brands shouldn't be a problem.

Then celiac was picked up again with actually acid in my stomach.

Not sure what you mean about the acid in your stomach, but if you had bacteria thriving in your stomach then your stomach acid was probably low. Otherwise, it wouldn't have survived. Are you taking any other medication?

[Ela499 in reply to greygoose]

Sorry I had a lot of acid and a bacteria ( h Holibater) spelled wrong am sure and that caused me to have a lot infections in my tonsils. Apparently there was signs of the acid on my stomach during my celiac camera test. Not sure there as never asked questions about it.

I am not in another medication. I am suppose to be on tiporamde for headaches but read that it can affect the levo intake and tsh. Is that true? Have you hurd of such thing?

Also I need to check something. My tsh was 20.58 before medication (Feb started it) and went down to 4.89 being on 50mg (March 11th). Could that be that my actual thyroids are still function? I would of thought if tsh being that high I would of been on 150/175mg???

[greygoose in reply to Ela499]

I very much doubt you had a lot of acid. Helicobacter cannot flourish in high stomach acid. You probably had low stomach acid, like most hypos, and that's why the Helicobacter took up residence. And that was why your vit D, vit B12, folate and ferritin were all low. Nothing to do with the Coeliac.

I've never heard of tiporamde, and Google hasn't, either. I think you must have spelt that wrong. But, normally, it's ok to take these things if you take them at least two hours away from thyroid hormone.

I would of thought if tsh being that high I would of been on 150/175mg???

I think it would have been a very bad idea to start you on 150/175 mcg (not mg) levo. All hormones should be started low, and increased slowly, to give the body time to adapt to them. It can be a tremendous shock to a body that has been low on thyroid hormone for a long time - and it's usually a long time before you get diagnosed - to suddenly be swamped with a huge dose.

With levo, you should start on 50 mcg and increase by 25 mcg every six weeks until you reach the dose you need. Not some preconceived idea of what you could need.

So, make sure you get tested six to eight weeks after every increase in dose, and your dose increased if you still feel unwell. I realise that can be difficult with some ignorant doctors (and, of course, in the present time) but it really is your life at stake, so worth persisting.

[Ela499 in reply to greygoose]

Thank you. I will be trying to speak to gp again and request help via endo again. Is hard atm deff. Thank you for all your help

[greygoose in reply to Ela499]

You can probably get telephone appointments, though, can't you?

[galathea in reply to Ela499]

If its all symptoms of childbirth, you could ask why you have antibodies? Have a read of Your thyroid and how to keep it healthy by Dr Barry Durrant peatfield. Its a good starter book which expkains how everything works.

Xx

[Ela499 in reply to galathea]

That’s interesting about that actually. I will ask that question. Will look into that. Thank you

[SlowDragon Administrator]

How long ago were you diagnosed as coeliac?

Important to regularly test Vitamin D, folate, ferritin and B12

These are frequently very low with Hashimoto’s and improving to optimal levels can significantly improve symptoms

As a coeliac patient you should have vitamins tested too

What vitamin supplements are you currently taking?

[Ela499 in reply to SlowDragon]

Hello,

Ive been a celiac for around two years now as actually after my 1 child I was extremely ill. I had a horrible bacteria in my stomach for around 1 year and my vitamins (d, folic, iron) all had dropped extremely bad. Then celiac was picked up again with actually acid in my stomach. I am on vitamin d, folic, c and magnesium but not anything else. Should I be taking b12 and ferritin?

[SlowDragon Administrator in reply to Ela499]

You need regular retesting of vitamin D, folate, ferritin and B12

Frequently vitamin D isn’t high enough

good vitamin B complex may be better than just folic acid

This would keep all B vitamins in balance and make sure B12 is high enough

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Hashimoto’s can be caused by gut bacteria or infections

hypothyroidmom.com/hashimot...

Ferritin is the storage form of iron