Thyroid UK
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Have I got Hashimotos

And why is it that when I don't take levo I feel ok and when I do take it I feel awful please. When I take it I get aches, tiredness, cramps, muscle spasms, heavy periods. Thanks

Dec 2017 taking 50mcg levothyroxine

TSH 5.77 (0.2 - 4.2)

FT4 14.7 (12 - 22)

FT3 3.3 (3.1 - 6.8)

TPO antibody 504.5 (<34)

TG antibody 708.3 (<115)

Ferritin 16 (15 - 150)

Folate 2.3 (2.5 - 19.5)

Vitamin B12 221 (190 - 900)

Vitamin D total 30.3 (25 -50 deficiency)

Iron stopped Feb 2017

Folate stopped June 2017

Vitamin B12 not yet started

Vitamin D stopped Mar 2016

35 Replies
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Hi Ana8, I have really struggled with an increased dose of Levo and felt much worse on it - I had much worse brain fog, tiredness and lack of enthusiasm. I'm still trying to get my brain around it all, but you might want to read a reply by Diogenes in my post here: healthunlocked.com/thyroidu...

Have you got any recent blood test results of your free T4 and free T3 levels? Have you ever had free T3 checked even? (a lot of GPs don't test anything bar your TSH which doesn't show the whole picture at all). That might give you some insights in to why you feel worse on levo (which is basically a T4 replacement. T3 is the active hormone that T4 needs to be converted to in the body). Post your test results as that will help people give you informed replies.

Nutrient levels can also affect things. I had a quick look at your profile and it looks like this is your first post. Things like Vit D, Vit B12, ferritin, folate, can all be messed up by hypothyroidism.

Sorry, that's a bit rambly. Hope some of it helps. You'll get some more replies too :)

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TSH 5.77 (0.2 - 4.2)

FT4 14.7 (12 - 22)

FT3 3.3 (3.1 - 6.8)

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I'd suggest that you edit your original post and include these in your post. There are plenty of people here who are good at interpreting test results. I'm still learning! Good luck.

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Done

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They look pretty dire. Was this after initial testing? What has your GP done about raising these levels? ANd some of them were tested quite some time ago - have they been re-tested recently?

Also, have you been tested for any thyroid antibodies at all? There is a hypothyroid condition called Hashimoto's. This can send your nutrient levels particularly out of synch.

I'm still learning but there are some people on here who have very good nutrient knowledge. SlowDragon greygoose for starters. I've tagged them, so you should get some more info.

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Vitamin and mineral levels checked in Dec 2017, thyroid antibodies are

TPO antibody 504.5 (<34)

TG antibody 708.3 (<115)

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Yes, you've got Hashimoto's too. I've read that cutting out gluten can help to reduce the antibodies. I also understand that the effect of antibodies attacking the thyroid, means the thyroid can suddenly release lots of thyroxine in to the system, which might explain some of your symptoms. But as I said, I'm still learning, and have a lot of brain fog, so I don't always take it in very well!

I'd put your antibody results in your original post too, and perhaps edit the title to include something like, 'Have I got Hashimoto's' or 'advice please on Hashimoto's', then you'll get some more informed replies.

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Has your doctor not addressed or started to address these nutrient levels?

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Iron stopped in Feb 2017 due to iron infusion, no iron prescribed since then

Folate stopped in June 2017 due to starting B12

B12 not yet given even though was meant to have been done June 2017

Vitamin D stopped in March 2016 due to tablets causing breathlessness and kidney stones and pains in ribs

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Have a read of slowdragon's reply on this thread, whilst you wait for some replies: healthunlocked.com/thyroidu...

You can also use the search box to search on hashimoto's.

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Also, add what dose of levo you're taking to your original post. That will help give people the full picture too.

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Why would Vitamin D tablets cause kidney stones and pain in ribs??

Who said to stop them?

Adequate Vitamin D is essential for correct absorption of Calcium. Without sufficient Vitamin D - Calcium can be sent to wrong places (tissue, blood vessels) instead of bone.

What Vitamin D tablets were you prescribed? Did you also take Calcium?

Look up the symptoms of Vitamin D deficiency - one of them is bone pain !!

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GP said to stop them. They were Desunin 800iu D3. No calcium

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But why? What was your Vitamin D result when he said to stop?

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30.3 (25 - 50 deficiency) I asked him if I could have alternative D3 tablets and he said there weren't any

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Why what's wrong with Densunin?

I take them .

I said that I didn't want the Fultium-D3 because I didn't wish to take blue food colouring every day for the rest of my life.

Have I made a mistake?

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Ana8, you need to take 5000 i.u. of D3 with K2. So important. D raises calcium levels which might be the reason it is taken for scurvy so it is necessary to have K2 at these high levels. K2 will direct calcium to the bones and teeth and NOT soft tissue.

D3 fights infections and is actually a hormone and also helps your thyroid hormone to perform. Low calcium is the reason for kidney stones.

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Iron deficiency diagnosed 2013

Folate deficiency diagnosed 2016

Vitamin B12 deficiency diagnosed 2017

Vitamin D deficiency diagnosed 2013

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and have these been treated and re-tested? If you've got results and ranges, post these in your original post too.

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Added

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Iron stopped Feb 2017

Folate stopped June 2017

Vitamin B12 not yet started

Vitamin D stopped Mar 2016

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You could be reacting to the fillers in the tablets - try asking your doctor to prescribe a different brand. There are several to chose from.

Or, more likely, because you're just not taking enough. How much are you taking?

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50mcg Levothyroxine

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That's not nearly enough. How long have you bee on that dose? Has it ever been any higher?

As you have Hashi's, has your doctor tested you for Pernicious Anemia? If not, he should. And you should restart supplementing your other nutrients. There's no point in just taking the supplements until your levels rise, and then stopping. The levels will soon go down again. You need to take a maintenance dose.

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On this dose since October 2017, was 175mcg before that

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OK, so I supposed your FT4 went up over 30, your FT3 over 10 and your TSH became suppressed, your endo panicked and slashed your dose. Typical endo reaction. They have no understanding of Hashi's, but that's what Hashi's does! He needs to increase it again.

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No my FT4 was 20.8 and FT3 4.0

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OK lol Lost that bet, didn't I! lol

So, why did he reduce your dose like that? Suppressed TSH?

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TSH was below range at 0.03 yes

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Stupid man! That really doesn't matter at all! TSH is totally irrelevant once you're on thyroid hormone replacement, unless it goes high - like yours. If it is low, it's because you don't need it anymore.

Your TSH was low because your FT4 was high. But your FT3 was too low, showing that you have a conversion problem - like many Hashi's people - although your low nutrients will also have a negative effect on your conversion.

Had he known anything about thyroid, he should have ignored the TSH, reduced your dose of levo by 25 mcg and added in some T3 at 5 mcg. But, obviously, he knows nothing!

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That is typically what happens with low vitamins associated with Hashimoto's

Here's similar post - probably (hopefully) your vitamin levels are not quite so bad?!

Low vitamins causing low TSH high FT4 - endo insists incorrectly on dose reduced

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

So you need to slowly increase your Levo back up in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range

So your very high antibodies confirm you have Hashimoto's

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

Obviously your deficiencies are not being adequately treated

It's appalling you have not had B12 injection yet and diagnosed in June. Put in a complaint in writing to practice manager and insist you get first injection this week

B12 deficiency is a serious condition

Neurological damage can be irreversible

So because you have not had B12 injections and other deficiencies corrected, you dose of Levo was cut

your huge cut in dose will have now made deficiencies MUCH worse

Post your actual results, since dose reduction members can advise on how to improve

Perhaps start a new post as thus one is quite long

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

Low vitamin levels affect Thyroid hormone working

So it becomes a vicious circle

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

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...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

please email Dionne:
tukadmin@thyroiduk.org

Prof Toft - article just published now saying T3 is likely essential for many

rcpe.ac.uk/sites/default/fi...

However with Hashimoto's we must get vitamins optimal first. Levo dose increased enough to lower TSH down to around one and FT4 towards top of range.

Extremely likely you need to be strictly gluten free

Once you have all these sorted, if FT3 remains low then, like many with Hashimoto's, you may need the addition of small dose of T3

Email Dionne at Thyroid Uk for list of recommended thyroid specialists

So get your dose increased back 25mcg at a time or possibly larger 50mcg steps if you can tolerate that

Get vitamins adequately treated

Seriously consider gluten free diet

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Yes. Tests positive for Hashimoto's.

Levothyroxine needs to be taken regularly every day. It has a 5 day life. So, for example, side effects of an overdose would not be experienced until up to 5 days later.

Stopping and starting your Levothyroxine is the worst thing you could do. It's likely that your symptoms are from when you previously stopped taking it. When you feel ok, not taking it, relates back to previous days when you took it.

Weren't you given any guidance / instructions when diagnosed? Have a word with your Endocrinologist or GP.

You needed increase to 75mcg after theses bloods. BUT - if these weren't "honest" results on 50mcg daily ( because you didn't actually take it everyday) then I would re-start on 50mcg, take every day, early morning , with water only and 30 to 60 minutes before food and drink. AND get all your supplements sorted immediately. All results show deficiencies and need addressing. Ask for testing for Pernicious Anemia . You could post results and symptoms on Pernicious Anemia forum if you wish and see what advice is. Look up the symptoms of deficiencies in each of these nutrients on NHS choices and other sites.

Once you are on correct doses of supplements and taking your 50mcg Levothyroxine every day - ask to have repeat Thyroid tests after several weeks. Then you may need 75mcg.

Post again then for further comment but please make reference to this post.

Take supplements with lunch. No medication or supplements at same time as Levothyroxine.

Did you have any test to check your Adrenals?

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Hi i was not given any instructions or guidance when taking Levothyroxine. Was taking 50mcg every day during those results. No tests for adrenals

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I thought you said that you were starting and stopping Levothyroxine?

You need immediate increase and I would ask about some T3.

In several weeks time when all supplements have been taken regularly at correct dose and 75mcg Levo every day - have retests and expect to increase again. And so on.

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Yes, you have Hashis. You also have dreadful vitamin levels. You should be on 3 x 210 ferrous fumarate a day (taken with vitamin C) until ferritin is at least 70, then a maintenance dose or liver a couple of times a week. If you have any indication of low B12 symptoms, you should be tested for perniscious anaemia. After that, if you don't getB12 injections you should be prescribed folic acid and also ake about 5000iu sulingual methylcobalamin until B12 is top of range and then about 1000iu as a maintenance dose. You also need at least 5000iu (proabbly more) vitamin D3 a day until vit D is around 100.

You are undermedicated and need an immediate increase of 25mcg and retest in 6 weeks with further increases until free T4 and free t3 are in the top quarter of their ranges and TSH is where ever it ends up when that happens (under 1)

You also need a new GP as your curent one is obviously useless - might be worth complaining about poor treatment,since your iron etc was stopped when it was obviously necessary. Worth going gluten-free also, but not until after you have been tested for coeliac.

Without good nutrient levels you can't absorb and use the levo.

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