Here we are again. Hashimoto's and levothyroxine intolerance

I should also add that I have an enlarged thyroid gland for c. 3 years which I have recently had scanned. I've also had a full hysterectomy this year.... Maybe that's brought this on?

'I don't want to go on levothyroxine again as I clearly can't tolerate even a low dose'

Paradoxically, a low dose can make you feel worse than a higher dose. 50 mcg is the normal starting dose - don't know why doctors insist on starting some people on 25 which is likely to make them feel worse!

Agitation and palpitations can also be symptoms of under-medication - not quite sure what you mean by 'hyperactive' - so it's quite possible you would feel better on the higher dose. But, as I said, it's only a starter dose, and you would need to be retested after six weeks, and your dose increased by 25 mcg. And that process repeated until all your symptoms are gone.

There aren't really any alternatives to levo on the NHS, I'm afraid. Some people do manage to get T3 or Armour prescribed but it's getting harder and harder. And, in any case, you will always be started on levo. However, there are different brands of levo, so maybe trying a different one will suit you better. Do you remember which one you had?

Another possibility is that the levo made you feel bad because you have nutritional deficiencies. All nutrients need to be optimal for thyroid hormone to work properly. So, if I were you, I would ask your doctor to test your vit D, vit B12, folate and ferritin, to see what your levels are like.

Try a different brand of thyroxine or in liquid form. Also what other posts have suggested.

Karen

Have you ever had freeT4 or freeT3 tested? It's possible they'll shed a bit more light on your situation. TSH tells you very little, really.

Agree with others that you need to get vitamins and minerals tested. Most important are: Ferritin, folate, Vitamin B12 and Vitamin D.

Also agree that a low dose makes many people feel crappy. Yours sounds worse than most, but it's worth trying 50mcg, or maybe even a higher dose of that doesn't work out - 50mcg is still low enough to make people feel worse.

Assuming your high antibodies are anti-thyroglobulin or thyroid peroxidase you have Hashimoto's, also called autoimmune thyroiditis. This means your thyroid will continue to deteriorate over time, and eventually you will get more and more symptoms. Having accasional lower TSH (which signals higher thyroid hormones in the body) is also consistent with Hashimoto's. As the antibodies attack the thyroid they sometimes dump thyroid tissue and stored hormone into your blood, so people with Hashi's can sometimes have hyper symptoms for short periods. This is called a flare up.

Hi BBBOA, this could be an adrenal gland problem; anxiety is one sign. I took small amounts of T3 only for a while which helped.

Ray Peat said:

In experiments, progesterone was found to be the basic hormone of adaptation and of resistance to stress. The adrenal glands use it to produce their anti-stress hormones, and when there is enough progesterone, they don't have to produce the potentially harmful cortisone. In a progesterone deficiency, we produce too much cortisone, and excessive cortisone causes osteoporosis, aging of the skin, damage to brain cells, and the accumulation of fat, especially on the back and abdomen.

Ray Peat said:

"If your thyroid is working efficiently, your pituitary doesn't have much to do and you're not likely to get a pituitary tumor, your adrenals don't have much to do, and your ovaries don't get over stimulated. The other glands have an easy job when your thyroid is working right. If your thyroid gets interfered with, you have to rev up your adrenals and your pituitary becomes commander in chief and tells everyone what to do."

stopthethyroidmadness.com/a...

The other thing I don't understand is why I feel agitated and stressed rather than tired and fatigued when the results I do have suggest hypo rather than hyperthyroidism.( I have been feeling very flat too though for a few weeks) . Can you have symptoms from both? Unless of course I missed the hyper flare itself and have had the blood test on the other side of it?

V. Interesting to hear that I'm not the only one who is so sensitive to it. Thanks again

Hi, I am also Hashi and listened recently to Dr Peter Osborne from Gluten Free Society.

He said that no 1 trigger in autoimmune hashi is infections (EBV and others), foods, toxins and nutritional deficiencies. In one of his videos about deficiencies and the thyroid he said that it takes 10 minerals and vitamins for the thyroid to work properly.

Besides, even nhs leaflet on levothyroxine says that one should not take thyroxine if one has adrenal deficiency. Perhaps it would be a good idea to start from identifying your triggers and take a comprehensive approach not a piecemeal one. Functional medicine practitioner should be able to help. The sickcare is not able to help as it it all about disease not health.

Symptoms of hypothyroidism can mimic hyperthyroidism. Get copies of your results and also have your B12, Ferritin, folate and Vit D tested (again).

you may not tolerate lactose which is in a lot of medications but there are usually lactose free or gluten free versions. I skimmed the replies but didn't see reference to being gluten free which might help with those high antibodies. Most Hashimotos patients find it helps.

ALWAYS get copies of results and NEVER take "normal" as adequate.

Not eating gluten has been mentioned a few times here. I, in my humble opinion, believe you should ask for a test to find out if you are coeliac BEFORE removing gluten from your diet as, possibly, constituents in the medications you have tried may contain gluten, as we all know, if we are hypothyroid we may also be coeliac! I am hypothyroid and my granddaughter aged 12 was diagnosed coeliac a few months ago and my daughter aged 42 has just been diagnosed coeliac too! I am off to my GP for the test too asap!

Update on results following chat with GP.

FT4 14 (10-19)

TSH 19.07 (0.5-4.5)

Antibodies 1000+

My GP informed me that they only test T3 if the T4 was not in the normal range.

She wants to start me on Levothyroxine,but due to previous issues she is looking into whether I can have half a 25mg tablet as a starting point. Am very apprehensive following previous adverse effects. Have discussed retest in a couple of weeks to see if it is part of a hashimoto's flare. When this happened previously my TSH was 10.

Is the general view that those with hashimoto's and enlarged thyroid, and a normal tsh results etc should be on Levothyroxine? I know my thyroid is going to conk out at some point so will taking levothyroxine prolong it's life expectancy?

Thanks

I was started on Levothyroxine 50mcg back in April and felt awful. I too had antibodies 1000+. I was really reluctant to keep taking it as I felt so bad but persevered. I felt agitated, had palpitations and just felt generally unwell. Even when the dose was increased up to 100mcg I still felt unwell. I was off work for weeks. It wasn't until the dose was increased to 125mcg that I actually started feeling normal again. I was convinced it was the Levothyroxine that was making me feel bad but I'm still taking it so I in my case I think my body was adjusting and I needed to get to the right dose. I have been taking vitamin supplements and the levels are a lot better now so that's probably helped. Also been gluten free. Hope this helps a bit.

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

About 90% of all 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 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

Is see you are already gluten free

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

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...

The fact you can not tolerate Levo suggests very low vitamin levels and possibly adrenal complications (common when under medicated or untreated for a long time)

You may need to start with 50mcg alongside propranolol to block adrenalin

Like Tristy i felt extremely hyper until dose increased high enough to 125mcg. I had to take propranolol for decades until went gluten free

The fact you can't tolerate vitamin D supplements despite being very deficient is another symptom too

Improving your vitamin D will increase your body's desire to increase thyroid levels

I had similar issues with thyroid hormones and vitamin D supplements. More on my profile

Was diagnosed by endoscopy as severely gluten intolerant with absolutely no gut symptoms

I had a lamp (just sold it to another on here) more about lamp on profile

Try Better You vitamin D mouth spray it's much better absorbed and avoids poor gut function

But would suggest you supplement magnesium first.

Thank you Slowdragon. Update is I have more blood tests booked including FT3 and am doing the 24 HR cortisol wee test. Will have to wait until April for my endocrinologist appointment. I am considering going private, but not sure who to see. I got the list from Thyroid UK, but there is no one local to me - Bath /Bristol in SW England.

Since previous posts I have increased nausea and aches and pains. My stomach is also irritated with gastritis like symptoms. I've lost some of the anxiety symptoms so I am wondering whether this is me going into the hypo symptoms or whether it relates to my tinkering with HRT. Pretty demoralising I have to say as feeling rubbish and a bit of a battle to get through working day without flushes, nausea and occasional dizziness. Like I said, hard to tell whether gynae or hashimoto related!

So going back to vit D.... I have some lotion somewhere to try, but have been struggling to find a suitable lamp.

Also, regarding stomach issue, I do have some ranitidine that I have been off for a while, but by what I see here you can have too little stomach acid.

How do I look at a profile? I am interested to hear about your struggle with vit d and thyroid treatment.

Many thanks.

Thought I would update you on my retest. Having a a TSH result of 4 I'm October 2017, which went up to 19 in December, with no levothyroxine, it has now lowered to 11.i am having another retest in 5 weeks. I have Hashimoto's thyroiditis and am levothyroxine intolerant. GP agreed it was right not to go on levothyroxine straight away. Endo appointment in April. Not really sure how that will go as going to presumably need a replacement at some point. . Also, with hypo results I was feeling more hyper, with palpitations, anxiety and shallow breathing and generally feeling poisoned. I knew the levels were improved as I've been feeling much better. What a battle!

Im so glad ive found this post as im feeling the same way and have posted on this site for advice.

I have had 3 recurrent miscarriages and cant conceive again until my thyroid levels are optimal but i cant tolerate the levothyroxine.

I have had some good advice from members on my own post but still unable to tolerate it. Iam currently on my 4th try and cant leave the house i feel so bad.

I have asked my doctor for the liquid form to see if having no fillers would benefit how i feel but have been refused as its too expensive to the nhs.