Thyroid UK

Here we are again. Hashimoto's and levothyroxine intolerance

Hi.

I haven't been here for a while as I haven't had much change to my TSH levels for a while. They have always been a bit higher that normal, but under 5,apart from the odd swing to about 10. I'd been feeling wired and anxious so got another test done and this time it was 19.07. I also have permanently high antibodies, over 1000. When I tried 25mg of Levothyroxine a while back it actually made me hyperactive, agitated and gave me palpitations, so I was taken off it. My tsh went make to a relatively normal range within a few months. This time the tsh is higher, and apparently the T4 is in normal range. I don't feel tired particularly. Mainly anxious and agitated. I am worried about seeing the Dr next week as I don't want to go on levothyroxine again as I clearly can't tolerate even a low dose. (I should add I struggle with most medications). What are the alternatives? I've read about Armour in the past. Is it available in the UK on the NHS? If not, how do I get it? Many thanks.

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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?

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A full hysterectomy won't have helped! But no knowing if it's what brought it on. Are you on HRT?

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Yes on Estrogen only as can't tolerate progesterone!

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Did they advise having your enlarged gland removed?

When my thyroid problems first started, I was hyper.I couldn't sleep,lost a stone in weight.It wasn't until my thyroid gland enlarged that I went to the Doctor,had a scan and found out what the problem was,which was Hashimoto's.They didn't give me any drugs at that time,to be honest I was feeling o.k., I had lots of energy,my migraines went away,my periods went away,happy days!

Then the thyroid got bigger and I was having trouble swallowing,so they advised removing it.,as it was gradually being destroyed anyway.Obviously afterwards I had to go on thyroxine as I had no thyroid left.

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'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. :)

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Hi there. I've Had a full blood count done and that was normal. My vit D was 30(should be 50+?)Also have had intolerance to vit D supplements too!!!

There's a pattern here! Can't tolerate any medication!!!

Thanks for your advice.

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What kind of vit D did you take - mine is D3 and in an oily gel capsule which goes down without any issues. There are many brands available, so it may be worth asking around for one that suits those with allergies.

If it was in tablet form with added Calcium and a load of fillers I can understand why.. they always caused me to get indigestion.

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Hi. I've tried the capsules and tablets. I tend to have a weird reaction after all of them. I go dizzy, palpitations, feeling of burning skin etc

All very strange! I have the same with most new medicines.

Has anyone tried a lamp?

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I used to go to a sun spa (before they closed) & then was going to get a similar vit D lamp for £300+ - but I thought the cash better spent on a sunny holiday! :)

Some folk are unable to take them, however when I first supplemented Vit D, symptoms became much worse to start, in my case shin & rib pain, but I researched that this was a possibility. And it was SO worth it to be pain-free after a few months.

Can you take multivitamins? try low doses, say until you sort out what you are actually low in and get full results.

Please obtain your TSH/FT4/FT3 results (with ranges in brackets) for folk to comment further - best start a new post :)

Your thyroid is probably enlarged (goiter) to produce more thyroid hormone for you and the adrenals will be helping too.

Possible causes of palpitations (in relation to Thyroid)

- starting T4 or T3 (or even NDT)

- too low a dose of hormones above

- vital mineral deficiencies - especially iron

- adrenals compensating for low thyroid function

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When I was diagnosed with Myxodema (total Hashi's Curse) 21 yrs ago, I had just had a massive heart attack. I was started on 25mcg thyroxine and had blood tests every 2 weeks to check whether it was safe to increase the very low dose, without further heart risk. That's why new patients are started on small doses, giving their bodies time to adjust.

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Yes, I know that can be the case with some people, but as far as I know, this poster hasn't had a massive heart attack, so there was no need to start her on 25 mcg.

50 mcg is also a small dose, a starter dose. With hormones you always have to start low and increase slowly. But, as I said above, starting on less than 50 can make you worse than you were before. It's just that some doctors don't understand that.

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

Karen

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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.

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I had the free t4 tested too and that was apparently in the normal range. What does that mean then if the tsh is not normal? It's v. Confusing!

When I tried the levothyroxine before, I couldn't sleep, went for 2 walks, swimming and was on an exercise bike at 6 in the morning. I literally felt like running down the street screaming!!!! Completely agitated and hyperactive. That is not me!!!

Hence the concern at trying it again! I have a Dr appointment on the 8th. What should I be asking?

Many thanks for all of the responses.

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It's not about just being in the normal range, it's about being in the right place for you in the range. Just telling us it was in-range tells us nothing. And, your TSH being high, probably meant that your FT3 was very low - you really do need that tested - and that all that rushing about was making it lower. You really do need the correct tests done to know what going on.

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Thank you. So I need to get the free T3 checked, the actual figures for the FT4. That combined with the TSH of 19.07 and the antibodies greater than 1000 should give a better picture of where to go next.?

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You need the FT4 and the FT3 tested at the same time, to see how well you are converting. Then post all your results, with the ranges.

The high antibodies mean you have Hashi's, but I doubt that has anything to do with you not being able to support levo. But having Hashi's probably does mean that you have low nutrients, which won't help.

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OK will do. Thanks for the advice.

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You're welcome. :)

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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...

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This is probably true for me. I haven't had any progesterone for at least 2 years being highly intolerant of it. I have previously had adrenal tests I think. Is that where the measure your urine for 24 hours?

I think I have that book from when things initially went a bit odd a few years ago. Will dig it out.

Thank you for your response.

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And the adrenals use cholesterol to make progesterone. Why was the hysterectomy necessary? Progesterone protects from cancer unlike estrogen. You can try a progesterone cream. When you get adrenals in order perhaps you can tolerate thyroid hormone.

Usually the test is a saliva test which looks at ACTIVE cortisol. Taking samples four hours apart throughout the day.

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I had a hysterectomy because I couldn't tolerate progesterone, having had my ovaries removed due to severe Pmt, endometriosis and painful ovulation. As you can't have unopposed Estrogen with uterus intact I had to have the hysterectomy.

I'm hindsight I'd probably have never had my ovaries removed!!

I just read that if you have abnormal tsh but NormalFt4 you are at risk of developing a thyroid issue. I've got enlarged thyroid and high antibodies and allready have a diagnosis of hashimoto's. Should I have been on levothyroxine anyway with the antibodies as a prevention?

I will ask the GP about adrenals again.

Thank you.

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I have a hard time in understanding your intolerance. Was it the type or additives or was it in conjunction with estrogen?

Your thyroid gland is being attacked. We found out that thyroid tissue looks a lot like gluten proteins and that's why it's recommended to stop all gluten for a while. Selenium helps tone down antibodies as well, up to 400 mcgs. for a time.

The fact your thyroid can still produce hormone is good but what happens after is the question. If you aren't converting into the other T's may be the reason you have problems. I don't know enough to say. Do you have any idea what your FT3 level is? You definitely need D3 as it helps all the other hormones work.

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My intolerance relates to pretty much every type of medication I try. This includes, replacement ones such a progesterone,, testosterone, anti depressants and even vit D supplements. It happens with gels, creams, and liquids. It's like my body can't tolerate anything foreign. As time has gone on, it's the same with things like nuts.

My concern is what happens next as at some point I clearly will need the levothyroxine but can't tolerate that either.

I will ask about the T3 tests when I see my GP.

It's frustrating as when I have seen endocrinologists (2 now on separate occasions) they both follow the 'watch and wait' school of thinking,saying my thyroid is essentially dying off slowly.

Thank you for your response.

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Have you ever tried enzymes? The idea is that allergens leave amyloids and proteins in the bloodstream The detox mechanism doesn't work well in hypothyroidism so these can accumulate and the immune system isn't prepared to clear them out. In fact with autotimmune disease, antibodies also leave residue when they attack cells. So proteolytic enzymes go around destroying these blood thickeners. Izabella Wentz recommended Wobenzyme. I've used serrapeptase and there are others. They do not have side effects so I would think you could handle them. There are many you tube videos about them as well.

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This explains enzymes. taoofherbs.com/articles/88/...

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Ahhh thank you. Will definitely look into that.

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With all these problems have you thought about whether you may have histamine intolerance. Does taking an anti-histamine help? It used to work for me - but since I've eliminated lactose /casein and gluten - I'm far less reactive. Enzymes sound interesting...

Heloise understands this really well - so I found this link that may help...

drmyhill.co.uk/wiki/Enzyme_...

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Yes I will look into the enzymes and also the histamine side of things.

Thanks

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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?

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Just thought I'd add my two cents as I have Graves Disease, had an enlarged thyroid for over 20 years and finally had it removed in 2013 (we couldn't keep my TSH levels consistent so I opted to have my thyroid removed and only use Levo to regulate my body functions). For some reason it's still a challenge to find the perfect dosage and I probably change doses every 6 months or so. But here's the part that may interest you: EVERY TIME I change doses, whether it's higher or lower, even if it's a miniscule amount, I go through some lousy symptoms for about 5 weeks, the most prevalent one being agitation, anxiety, insomnia, and that wired-feeling. I have to take tranquilizers every time I change doses of Levo. So I wonder if maybe you're not giving the new dose enough time? It takes 6-8 weeks for your body to adjust to any dose change.

Good luck - I know it's scary and frustrating.

Sue

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

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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.

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Hi. I bring this up with the GP and/endo consultant and no-one ever wants to actually find out why I can't tolerate the medication. It's just buried under the carpet every time. No holistic approach whatsoever.

I will look up Peter Osbourne. Thank you!

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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.

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Hi. Yes I should get the actual numbers from the GP. Will do. I have been Gluten free for 2-3 years now, since it started.

Interesting to hear about symptoms being the same for either.

Thanks for advice!

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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!

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I've been off Gluten for a few about 2-3 years, since my initial diagnosis. I'm not coeliac, but I do have real issues with Gluten.... Even Gluten free oats give me real ibs symptoms. Otherwise, I've had some awful migraines after Gluten too.

It's frustrating that all of this has come up again for me as I hadn't had any real thyroid symptoms (apart from enlarged thyroid) for a couple of years.

Thanks for the response.

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In which case you need to check medications for gluten as many contain it!

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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

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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.

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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.

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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.

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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!

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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.

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I was going to ask about the liquid when I see the endo consultant. Wonder what they will say?! I'm finding as time goes by I am getting more thyroid related symptoms so can see I need some replacement therapy whatever it is!

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How did your appointment go with the endocrinologist? I have mine next week! Did you manage to get on the levothyroxine?

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My TSH level had reduced to 8.5 (was initially 19.9) without Levothyroxine. The feeling was it could continue to come down on its own. More blood tests in a couple of months. He stated that they don't put you levothyroxine for life until you are consistently a TSH of 10 plus. So I'm not sure if that relates to cases like mine.... A history of flares which resolved by itself. Regarding intolerance, he said that if I need to go on it, it may be a case of starting at a 12.5 dose,or possibly T3? BTW I am in the UK. Thanks for the question!

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So the endocrinologist said you would get prescribed t3?

Yes im Uk too and i need to get on the meds to get my tsh down for my next pregnancy but ive tried so many times and just cant tolerate levothyroxine

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I think that's what he said.... If when I needed levothyroxine, but couldn't tolerate it..... So possibly T3. He said the choice was very limited if can't tolerate levothyroxine!

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Oh and the last try i was only taking 12.5 mcg (halving a 25mcg tab)!!! 😣

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And did you have palpitations, shakiness etc?

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Yes!! Which is rubbish on such a low dose of thyroxine! My free t4 was 9 when i was pregnant so far too low even though my tsh hasnt been above 7.50.

I think i must just be super sensitive to hormones!

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I don't think that unheard of... I can't tolerate any hormones really. Am progesterone intolerant, couldn't use testogel, and am on the lowest possible dose of estrogel. Can take vit D either without having effects like shakiness /palpitation, cramps etc. I think some of us are just very sensitive to everything! Oh and I have fibromyalgia.... Sensitive to pain too 😐

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