Hashmitos patient

[Hj78]

Hi all I’m after some advice please, I’ve had 3 blood tests for tsh in the last 2/3 weeks. First one tsh 11.7 second 2wks after 3.78 and a third the day after (5.7) interestingly 2nd & 3rd blood test given after me missing several doses of levothyroxine which I’m supposed to take daily 100mg wockhardt brand due to causing me several side effects when taken on a daily basis and awaiting endo prescribing me ndt which now turns out he will not give. Any help and advice would be gratefull Appreciated as really don’t know where to turn.

[greygoose]

Were all the tests done early in the morning and fasting? TSH is highest early in the morning, and drops throughout the day. It also drops after eating. The TSH doesn't change that fast, so it would be rather strange if it does go up and down like that.

Do you have high antibodies?

[Hj78 in reply to greygoose]

First test was in the afternoon non fasting, second test exactly 4weeks later sorry not 2 as previously stated and again afternoon non fasting and third day after morning and again non fasting. Not sure of antibodies as not tested. Last time they were tested March 2017 by endo and were abbot thyroid abs 137 were told these were high because I have thyroid problems. Also have low ferritin ranging from 16-27 which is what they are at last test with tsh due to me taking iron tablets I’ve purchased myself as just don’t feel right if that makes any sense and thought it could be because ferritin low in range.

[greygoose in reply to Hj78]

lol Well, that's one way of putting it. I would have said you have thyroid problems because you have high antibodies.

High antibodies mean that you have Hashimoto's Thyroiditis - aka Autoimmune Thyroiditis. It's an autoimmune disease where the immune system slowly destroys the thyroid. This causes levels to fluctuate. So, with the Hashi's, and the time differences, yes, it's quite possible to have your TSH results jumping around like that.

There is no cure for Hashi's, which is why doctors tend to ignore it. But, you could try and help yourself by adopting a 100% gluten-free diet, and taking selenium. But, what you really need is to get your TSH down to zero, and keep it there.

[Unhole in reply to greygoose]

Hi there.. interested in your comment regarding ‘getting TSH down to zero and keeping it there’...how’s this done?...

[greygoose in reply to Unhole]

By taking enough thyroid hormone replacement - levo, or whatever.

[Unhole in reply to greygoose]

That means I should have my TSH tested again presumably...is that right?

[greygoose in reply to Unhole]

I'm not quite sure why you say that. When did you last have it tested? What was the result? What are you taking and how much? Does your doctor test anything other than TSH?

According to your last post, you don't even know if you have Hashi's. So, the first thing you should do is get your antibodies tested.

[Unhole in reply to greygoose]

Hi and thank you for your very keen observations!👍...I found out that I had been tested and it showed the antibodies though no GP has actually said I have this particular condition!...My TSH is 2 which I’m told is perfect (I’m on 75mcg of levothyroxine )...I was told that won’t be rechecked for another year! and my antibodies won’t be rechecked.

I’m not happy with this ‘go away you’re fine’ approach based on a few blood tests but that’s what I’m experiencing from the docs. 😕

[greygoose in reply to Unhole]

And you're right not to be! A TSH of 2 is too high, should be one or under. 75 mcg levo is not much more than a starter dose. And, if they're only checking the TSH, they have no idea of your thyroid status.

You cannot rule out Hashi's on the basis of one negative test, because they fluctuate. Also, there are two types of Hashi's antibody and the NHS only tests one. Plus, not all Hashi's people develop high antibodies, so even with low antibodies, you could still have Hashi's.

But, if you want to know more, please start your own thread, it's not fair to squat Hj78's thread.

[Unhole in reply to greygoose]

Sorry HJ78....for squatting your post🕊

[Hj78 in reply to Unhole]

Not a problem, I’m interested in learning as much as I can about this condition. Thanks again both greygoose & Unhole

[Hj78 in reply to greygoose]

Thankyou for the information greygoose, I was diagnosed 10years with hypothyroidism although to my knowledge antibodies not tested until 2017 so didn’t realise I had Hashis until then which was only raised due to me asking why they were so high. Have taken levothyroxine 100mg from initial diagnosis until now although over the last couple of eras really struggled with side effects, rash constant on torso, ear problems sinuses and these worsen with raising my medication so am quite reluctant. I will try the gluten free and selenium, any recommendations on where to buy a good selenium tablet.

[greygoose in reply to Hj78]

I buy all my supplements on Amazon.

Have you had your vit D, vit B12, folate and ferritin tested?

[Hj78 in reply to greygoose]

I’ve had these tested will get results tomorrow and post. Thankyou for all your help 😀

[greygoose in reply to Hj78]

You're welcome.

[AMR7 in reply to Hj78]

The side effects will be coming from the fillers not the thyroxine. Would advise speaking to the pharmacist about trying another brand.

[FitnessFreakOz in reply to greygoose]

I am really interested in this reply. I have been going along well for years now (I have Hashimotos) and my TSH is always suppressed, less than 0.01. I feel fine, no probs, but my GP suggested a very low TSH can lead to osteoporosis and after a bone scan it seems i have osteo! I power walk at least 10kms daily, do resistance training 3 times per week, abdominal work and stretching daily. I see an endorcrinologist in a couple of weeks, but my GP is convinced, my very low TSH is the culprit. Vit D and calcium have tested normal.

Gosh I hate this Hashimoto's, don't want to decrease the dose but don't want osteoporosis either.

[greygoose in reply to FitnessFreakOz]

TSH has absolutely nothing to do with bones and heart. Your GP is wrong.

Do you have the actual numbers for your vit D and calcium? 'Normal' just means in-range in doctor-speak, but the ranges are so vast that it's where the result falls in the range that counts, not just being in-range. So, post your results in a new question, and we can discuss it further.

[FitnessFreakOz in reply to greygoose]

Vit D 95 (normal > 50), calcium 2.4 (2.15 - 2.55). I posted about 3 wks ago in a thread entitled 'Thyroxine induced osteoporosis'. I will update that thread once I see the endocrinologist, but by GP was stunned by the osteo diagnosis, I seem to be doing most things recommended for bone health.

[greygoose in reply to FitnessFreakOz]

No point in up-dated your old thread - nor in putting your results here, come to that - because hardly anyone will see them. Start a new thread.

[SlowDragon Administrator in reply to FitnessFreakOz]

Research here suggests Low TSH due to Thyroid replacement hormone does NOT cause osteoporosis

ncbi.nlm.nih.gov/pubmed/825...

Low vitamin D and/or magnesium may be a problem

articles.mercola.com/sites/...

betterbones.com/bone-nutrit...

betterbones.com/bone-nutrit...

[jimh111]

The TSH results of 3.78 and 5.7 one day apart is unusual but could be accounted for by the 5.7 result being earlier in the day along with some variation in the accuracy of the TSH assay. TSH also varies a lot during the menstrual period although one day would not make much difference. The point is not to get too hung up on minor changes in TSH. Fasting has absolutely no effect on TSH, it's a myth that somebody started and has been propergated without verifying it.

I would perservere with taking your levothyroxine. You may find your side effects disappear after a short time. Alternatively you could try taking two tablets on alternate days, this should halve your side effects and confirm that they are caused by the levothyroxine. Another option is to take a loratadine (non-drowsy allergy) tablet just before your levothyroxine. If your symptoms are due to an allergic reaction this might mitigate them for a while.

[Hj78 in reply to jimh111]

Thankyou for your advice I take a loratadine all year round mornings before Levo, have also tried staggering dosage over a long period of time side effects reduce but tsh always goes high so isn’t being treated a bit vicious circle. Endo agreed to try me on ndt but didn’t write prescription and doctors won’t do, they’ve contacted him but he has now said he’s unable to prescribe.

[jimh111 in reply to Hj78]

You can always try a different brand of levothyroxine. If you could find out what there is in the levothyroxine tablet that casues these effects that would be really helpful, but of course it's a very difficult task. It may be that you need a higher dose and that by resolving your hypothyroidism your intolerance will disappear. i.e. hypothyroidism leads to intolerances which resolve when the hypothyroidism is fully corrected.

Forgot to say your ferritin is low. This often occurs with hypothyroidism and gets better as the hypothyroidism is treated. You should however take iron supplements, at a different time of day to your levothyroixe.

[SlowDragon Administrator]

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. Dairy is second most common.

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)

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

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

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 at

[e-mail]

[AMR7 in reply to SlowDragon]

Excellent advice