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Thyroid UK
89,110 members • 103,638 posts

Advice please

Hi I am new and I think I have a thyroid problem. I have raised antibodies. Also bone pain, pins and needles, dry skin, goitre confirmed on ultrasound twice, cold intolerance, headaches, fluctuating weight, heavy and irregular periods, ovulating irregularly, stomach upset, constipation, losing hair, puffy eyes, tiredness. Is this something I should pursue? Thank you

THYROID PEROXIDASE ANTIBODIES 904.5 (<34)

THYROGLOBULIN ANTIBODIES 256.3 (<115)

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Absolutely yes. What are your TSH, FT4 and FT3 results and how long ago were these tests done

Did you also have vitamin D, folate, ferritin and B12 tested?

Post results and ranges if you have them

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

Low vitamin levels stop 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

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...

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TSH 6.3 (0.2 - 4.2)

FREE T4 13.8 (12 - 22)

FREE T3 3.5 (3.1 - 6.8)

Taking 50mcg diagnosed 2013 thanks

Reply

Kasia

If you were diagnosed in 2013 then you know you have a thyroid problem.

Your current problem is that you are grossly undermedicated to have a TSH over range and low in range free Ts. You need an increase in your dose so ask your GP to give you an extra 25mcg now then retest in 6 weeks time and if necessary another 25mcg increase, repeat retesting/increasing until levels are where they need to be for you to feel well, which for most of us is TSH 1 or below with free Ts in the upper part of their ranges.

However, as you have Hashi's, as SlowDragon has explained, you need to address that by being strictly gluten free and supplementing with selenium l-selenomethionine 200mcg daily which can help reduce the antibodies, as can keeping TSH suppressed.

Have you had vitamins and minerals tested, as these are very likely low due to the Hashi's. If they're not at optimal levels then thyroid hormone can't work. Ideally you need

Vit D

B12

Folate

Ferritin

and if ferritin is low then

Iron Panel

Full blood count

If you have these results, please post them with ranges and say if you are supplementing and the dose.

Have you ever been on T3 and had it taken away?

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Endo says I don't have thyroid problem, was on T3 before it was taken away

Reply

Kasia

Ditch this endo, he hasn't got a clue, like most of them, as they are nearly all diabetes specialists.

If you really want to see an endo then email dionne.fulcher@thyroiduk.org for the list of thyroid friendly endos and then ask on the forum for feedback on any that you can get to.

But your GP could manage this if he wants to. You already have a diagnosis of hypothyroidism and are taking 50mcg Levo, so there is no question there. Ask your GP for an increase in Levo as I have mentioned above. Use the following information in support of your request - from thyroiduk.org.uk/tuk/about_... > Treatment Options:

According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.

The booklet is written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It's published by the British Medical Association for patients. Avalable on Amazon and from pharmacies for £4.95 and might be worth buying to highlight the appropriate part and show your doctor. However, I don't know if this is in the current edition as it has been reprinted a few times.

Also -

Dr Toft 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 article by emailing dionne.fulcher@thyroiduk.org print it and highlight question 6 to show your doctor.

And Dr Toft's latest article just published rcpe.ac.uk/sites/default/fi...

Take someone with you to your appointment as doctors are less likely to fob you off if you have a witness, and if you can't be assertive then get your companion to speak up for you if necessary. Don't leave the surgery without an increase in Levo.

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Kasia

Why was T3 taken away?

Did a different endo take it away?

What were your results when you were on T3?

Did you feel well at any time you were taking T3?

Removing T3 can lower nutrient levels as well as Hashi's.

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T3 taken away because endo didn't like me using it. On 100mcg levo and half a tablet of T3:

TSH <0.02 (0.2 - 4.2)

FREE T4 20.8 (12 - 22)

FREE T3 5.5 (3.1 - 6.8)

TSH <0.02 (0.2 - 4.2)

FREE T4 20.3 (12 - 22)

Yes I felt a lot better on T3

FREE T3 5.2 (3.1 - 6.8)

Reply

Kasia

Those results look pretty good.

I take it that it was a different endo who took it away? I do think that's so wrong that one endo prescribes it, the patient does well and benefits, and a different endo comes along and takes it away. Cruel.

Personally, if I couldn't get T3 reinstated, I would self source it and go back on it, and even tell the endo what I was doing.

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Yes different endo

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Says I am a hypochondriac

Reply

Kasia

You are not a hypochondriac. We see these sort of comments almost daily. What your endo is doing is showing his/her ignorance. S/he doesn't know how to treat hypothyroidism, doesn't have a clue about Hashi's, and doesn't know about the importance of optimal vitamins and minerals and the role it plays in our hypothyroidism.

Have you had those vitamins and minerals tested that I mentioned? If so then please post the results, with ranges, and say if you are supplementing. My guess is that your Hashi's has trashed your nutrient levels, as is extremely common, and this will be a big part of your problem.

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FERRITIN 15 (15 - 150)

FOLATE 2.2 (4.6 - 18.7)

VITAMIN B12 226 (190 - 900)

VITAMIN D TOTAL 33.1

(<25 severe deficiency

25 - 50 deficiency

50 - 75 suboptimal

>75 adequate)

800iu D3, 3x ferrous fumarate, waiting for next B12 injection

Reply

Kasia

So, very much as expected.

FERRITIN 15 (15 - 150) 3 x ferrous fumarate

I assume you've had a diagnosis of iron deficiency anaemia to be taking 3 x FF daily. That is the correct treatment and you should be monitored.

For thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range.

You could really do with an iron infusion which will raise your level within 24-48 hours, tablets will take many months.

You can also help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...

Once your level is optimal then you need to maintain that level by either a reduced amount of iron tablets or continuing with eating liver regularly.

**

FOLATE 2.2 (4.6 - 18.7) VITAMIN B12 226 (190 - 900) waiting for next B12 injection

Did you have 6 x loading doses over 2 weeks and are now on 3-monthly injections?

What about your folate deficiency? Are you prescribed folic acid 5mg daily?

**

VITAMIN D TOTAL 33.1 800iu D3

Well, 800iu D3 isn't going to ever raise your level. It is hardly a maintenance dose for someone with a reasonable level, but it's probably all your GP is allowed to prescribe. If your level was below 30 you would be eligible for loading doses.

You might as welll sort your Vit D out yourself because 800iu will leave you deficient forever. My suggestion is to take 10,000iu daily for 4 weeks, that would be the equivalent of the loading doses, then reduce to 5000iu daily. Retest 3 months after starting then when you've reached the level recommended by the Vit D Council, which is 100-150nmol/L, you'll need a maintenance dose which may be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/

Your doctor wont know, because they are not taught nutrition, but there are important cofactors needed when taking D3

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

Magnesium helps D3 to work and comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds

naturalnews.com/046401_magn...

Check out the other cofactors too.

As you have Hashi's, for better absorption you would be better off using an oral spray as it bypasses the stomach, eg BetterYou. They do 3000iu dose so you could use the nearest equivalent for the doses I've mentioned above, i.e. 9000iu instead of 10,000 and 6,000iu instead of 5,000, then proceed as suggested.

**

You need to address the Hashi's, the absorption/gut issues and get your nutrient levels optimal, only then will thyroid hormone be able to work.

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Thanks taking ferrous fumarate since 2013. No loading dose of B12, just on 3 monthly injections. Prescribed folic acid but can't take it until result for intrinsic factor has come back, vit D below 30 when diagnosed

Reply

Kasia

Your GP really does take the biscuit.

You've been taking ferrous fumarate for 4 years and your ferritin level is still at the very bottom of the range. I think it's time you asked him why. You need investigations into why there has been no improvement. 4 years on FF should have seen your level much higher than that, I think you should insist on an iron infusion and some investigation into malabsorption issues.

He should have also given you loading doses of Vit D according to NICE treatment summary for Vit D deficiency:

cks.nice.org.uk/vitamin-d-d...

"Treat for Vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 nmol/L.

For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU] given either as weekly or daily split doses, followed by lifelong maintenace treatment of about 800 IU a day. Higher doses of up to 2000IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders. Several treatment regims are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."

Each Health Authority has their own guidelines but they will be very similar.

**

I thought loading doses of B12 was the norm. You could ask on the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc

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