Thyroid UK
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Advice for daughter needed please

Hi I am a new member and I am here on behalf of my 25 year old daughter who has given up trying to fight for her health and her life back. She was diagnosed hypothyroid in 2011 and never felt completely well on Levothyroxine. She was identified as having a clinical need for T3 as the higher her dose of Levothyroxine went up, the lower her Free T3 level became. She gradually felt much better and most - not all - of her symptoms had gone.

Come August 2017 and the endocrinologist that gave her the T3 was replaced by another endocrinologist who straight away told her to come off the T3 before she became extremely thyrotoxic. My daughter insisted the T3 did her some good and that it was keeping her in work (before she would be at home struggling to do any housework or even socialise) but the new endocrinologist was adamant in taking her off it despite her showing a clinical need for it. His reason for taking her off it? Not only because he was afraid of her becoming thyrotoxic but also because he does not support the use of T3. She was taking 150mcg Levothyroxine in conjunction with the T3 (1 quarter twice a day) and her dose of Levothyroxine was not adjusted after the T3 was taken away.

She is feeling incredibly ill and just basically given up trying to help herself because the endocrinologist is saying her symptoms of appetite loss, constipation, puffy eyes and ankles, bloating, feeling cold are not symptoms of hypothyroidism.

Any ideas where to go from here would be appreciated, her latest bloods are below.

Serum TSH - 5.68 (0.27 - 4.20)

Serum free T4 - 13.6 (12 - 22)

37 Replies
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Sadii

Well, she is obviously undermedicated at the moment as the aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo.

And here we go again with one endo prescribing T3 and the patient doing well on it, then new endo removing it. So wrong, so cruel and sadistic.

Have you got any other test results you can post? From when she was on T3? Post what she has, say what thyroid meds she was on at the time, what change was made and why.

Has she had vitamins and minerals tested:

Vit D

B12

Folate

Ferritin

Iron panel

Full blood count

Post results and say if supplementing.

Has she had thyroid antibodies tested - TPO and TG? Post results if so.

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Thank you, she has results from when she was on T3.

(75mcg Levothyroxine and 2 quarters of T3)

TSH <0.02 (0.2 - 4.2)

Free T4 20.8 (12 - 22)

Free T3 5.6 (3.1 - 6.8)

Same dose again

TSH <0.02 (0.2 - 4.2)

Free T4 20.3 (12 - 22)

Free T3 5.2 (3.1 - 6.8)

She has high antibodies as well, TPO was 647 (<34) TG was 266.3 (<115)

Will post vitamin and mineral results now.

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Sadii

Those are pretty good results, I take it she was feeling well? Absolutely no reason to withdraw T3 and she certainly wasn't in any danger of being thyrotoxic with those results.

What about when she was on 150mcg Levo plus T3? I'm imagining something happened to her results that required an increase in Levo from 75mcg? If so then that would have been down to

She has high antibodies as well, TPO was 647 (<34) TG was 266.3 (<115)

Has anyone bothered to tell your daughter that she has autoimmune thyroid disease aka Hashimoto's as confirmed by your high antibodies? This is where antibodies attack the thyroid and gradually destroy it.

Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. She needs to read, learn, understand and help herself where Hashi's is concerned.

She can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. She doesn't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...

Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. I'm expecting to see such low results when you post them.

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Thanks, she was feeling very well on the 75mcg Levothyroxine and 2x quarters of T3. Result when she was on 150mcg Levothyroxine only

TSH 1.30 (0.2 - 4.2)

Free T4 19.1 (12 - 22)

Free T3 4.2 (3.1 - 6.8)

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Sadii

Well that shows the need for T3.

Did you say that she was on 150mcg Levo plus T3 at some point?

I agree with the suggestion that Clutter has made further down, your daughter knows she did well on T3 added to her Levo, she has good results on 75 Levo plus 2 x 1/4 T3. Those of us who see these stories every day and see the misery these so called endos cause, will tell you that self sourcing and self medicating with T3 is probably the best thing she can do. If necessary, she can even tell her doctors what she is doing and why, damn the consequences, they are ruining her life, she knows she can feel better, just get on with it and buy some T3. Members of the forum experienced in using a combination of Levo and T3 can guide her, and if necessary private testing isn't that expensive if her GP wont support her.

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Sorry result on 150mcg Levothyroxine and 10mcg T3 was

TSH 0.03 (0.2 - 4.2)

Free T4 21.4 (12 - 22)

No FT3

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Sadii

Well, how very short sighted of the doctor who ordered those tests not to get FT3 tested when taking T3, it's fundamental for goodness sake. How on earth can the doctor say if the doses suit if they don't test! And for what it's worth, there's actually nothing wrong with those results that would prompt a dose change. Is this when her T3 was removed, after these results?

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Yes, her T3 was removed after these results.

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Sadii

Well, there can be no justification for that as there was no FT3 result.

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Interestingly her TSH is similar to mine at my last test (30+ years on thyroxine). and would indicate being hyper but both I and my doctor knew I was absolutely fine so did not reduce my thyroxine. Jeez when are doctors going to take symptoms into account. A solicitor once said I coukd have sued for the bad treatment I'd received in the early days. Trouble is when you're underactive you haven't the oomph to do much if anything! Get another opinion ASAP and goid luck.

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I am so so sorry to read, yet another life ruined by an arrogant ill informed endocrinologist

We have had 100's of similar posts. Wether they really believe this or are being pressurised by employers. (Due to cost)

It's extremely likely your daughter now has very low vitamin levels

Essential to test vitamin D, folate, ferritin and B12. Add results if you have them (plus ranges) or if nit been done get urgent appointment with GP and ask that they are tested asap

Was her dose of Levothyroxine increased to compensate? Her results suggest not

She needs immediate 25mcg increase in dose, retesting after 6 weeks. Increases until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Low vitamins will need improving

Does she have high antibodies? This is Hashimoto's also called autoimmune thyroid disease

If so then likely strictly gluten free diet may be necessary

See this post showing results after T3 stopped and how to improve

healthunlocked.com/thyroidu...

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She has high antibodies, TPO was 647 (<34) TG was 266.3 (<115)

Her dose was not increased to compensate

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Yet her TSH is out of range!

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Sadii,

Your daughter is undermedicated because the fool endocrinologist did not increase her Levothyroxine dose to compensate for the 10mcg Liothyronine withdrawn.

I would write a letter of complaint to the head of endocrinology and complain that despite doing well on 10mcg Liothyronine in combination with 150mcg Levothyroxine prescribed by Dr. x the new endo insisted on withdrawing it without adjusting Levothyroxine and your daughter is now symptomatic and undermedicated. Ask whether 10mcg Liothyronine can be reinstated as per the advice in the BTA FAQS to patients in british-thyroid-association...

If your daughter's endo doesn't agree to reinstate T3 your daughter can buy T3 online without prescription and self medicate. Write a post asking members to recommend sources via Private Message if your daughter wants to self medicate.

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Thank you, the endocrinologist does not agree with reinstating T3, he made that very clear.

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Sadii,

If your daughter wants it reinstated on the NHS she needs to appeal to the head of endocrinology or find a new NHS endocrinologist. Alternatively she can buy her own T3 and selfmedicate.

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The endocrinologist called her after these bloods were taken asking her why her results show undermedication. I am guessing had he have increased her dose to compensate this wouldn't have happened?

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Sadii,

He asked her why she's undermedicated? She's undermedicated because withdrawing 10mcg Liothyronine without increasing 150mcg Levothyroxine is effectively a dose reduction.

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That is correct, he asked her why she is undermedicated. I don't think he knows what he's doing

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Sounds like he doesn't actually know that T3 is a form of thyroid hormone roughly equivalent to T4.

I have had similar experiences with Endos in my own hospital. They think T3 and NDT are completely different medicines, and don't understand that Levothyroxine needs to be raised or lowered to compensate.

Absolutely shocking level of ignorance!

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She put in a complaint 2 weeks ago to this consultant

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Well done, the more patients that complain about this appalling treatment the better

He reduced her dose in effect by equivalent of at least 50mcg Levothyroxine and is surprised at the results - unbelievable

She will need to correct low vitamins FIRST, plus very likely necessary to be strictly gluten free

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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Well done Momma for trying to help your daughter.

This Endo needs to be struck off!! He needs to go and study the thyroid!!!!

Please purchase the T3 that she needs so that she can fight this battle. She has her whole life before her and this Endo has forgotten the no 1 thing that he agreed to - first do no harm!

There are people on here who can tell you where to buy T3 from.

Whereabouts in the UK are you?

I would then tell her to see her GP and insist that she sees a different Endo, hopefully we can work out which are t3 friendly.

Isn’t it just unbelievable?!!!!

Sue

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Thanks we are based in Bristol, UK. She spoke to her GP who said she clearly needs the T3 hence why the urgent referral to this consultant.

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Sadii

Ah! A supportive GP, fantastic! So in that case just buy the T3, she doesn't even need an endo!

But let's also see those vitamin and mineral results. The Hashi's might very well have trashed them and they will need optimising, as well as the Hashi's needing addressing, before adding the T3 back in.

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Before T3 was taken away:

Ferritin 146.3 (50 - 150) iron infusion was done 4 months before the blood draw, haematologist wants her ferritin above 50 but range is usually 30 onwards

Folate 10.0 (2.5 - 19.5)

Vitamin B12 538.7 (190 - 900)

Vitamin D total 70.1 (50 - 75 suboptimal) she was taking 6000iu vitamin D at the time

After T3 was taken away

Ferritin 61.1 (50 - 150) done 6 months ago, probably lower as her periods are heavy and clotty

Folate 2.3 (2.5 - 19.5) prescribed folic acid

Vitamin B12 226 (190 - 900) given B12 injection 6 months ago

Vitamin D 34.4 (25 - 50 deficiency) still taking the 6000iu vitamin D

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Have you sent these to endocrinologist and asked for an explanation?

I would

We see this time after time

The T3 was helping.

When T3 is stopped suddenly vitamin levels crash right out

Great that she has good GP

You need a new endo, if you want T3 on prescription

Private prescription enable purchase of cheap French or German T3

Otherwise without prescription it is possible, but pathways can be more dubious, but 100's if not 1000's are forced down this route. Especially if can't afford private endo consultation

Email Thyroid UK for list of recommended thyroid specialists dionne.fulcher@thyroidUK.org

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Thanks. No we haven't shown these to endocrinologist only because he might give us some rubbish explanation to cover up his removing of the T3

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Well, he might (just might) learn something

But obviously you are not going to see him again

Probably a Diabetes specialist.

Keep reading on here......readeverything you can

UK current treatment is terrible for many

They are pressurised (I suspect) NOT to prescribe T3 due to cost

dailymail.co.uk/health/arti...

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You might want to read this post from this evening

Discussing how we can stop this

There are literally 100’s getting same terrible treatment

healthunlocked.com/thyroidu...

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Take a copy of your results and show him then with a letter enclosed ask him for a comprehensive answer in writing to look at the results and explain why he has withdrawn your T3 and not increased your Levo.

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Sadii

Oh my goodness! SlowDragon is always saying that removal of T3 lowers nutrient levels and here we have absolute proof!

Ferritin 61.1 (50 - 150) done 6 months ago

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.

It might be worth retesting because if it's dropped below 50 then the haematologist may well do another infusion.

She can help raise her 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 her diet apjcn.nhri.org.tw/server/in...

**

Folate 2.3 (2.5 - 19.5) prescribed folic acid

Vitamin B12 226 (190 - 900) given B12 injection 6 months ago

One injection only? It's normal for 6 x injections over 2 weeks to start then 3-monthly injections. Is her folic acid 5mg daily?

You should go and post on the Pernicious Anaemia Society forum for further advice, they will tell you how to go ahead and sort this out healthunlocked.com/pasoc

**

Vitamin D 34.4 (25 - 50 deficiency) still taking the 6000iu vitamin D

What was her level originally? If it was less than 30 she really should have had loading doses of D3.

As her level is so low despite taking 6000iu, it's very likely that the D3 isn't being absorbed and that is probably due to the Hashi's. SlowDragon (Hashi's herself) always suggests an oral spray for D3 as it's better absorbed. BetterYou do an oral spray. She would be better off buying the 3000iu dose spray and taking 9000iu daily for 3 months then retest, then once she's reached the level recommended by the Vit D Council - which is 100-150nmol/L - she needs to find her maintenance dose which might be 3000iu daily, it's trial and error.

Her 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.

**

The fact that she is supplementing but feels no better will be because she very likely has malabsorption from the Hashi's and that will need addressing. Please check out SlowDragon's reply to this post for links and information to help

healthunlocked.com/thyroidu...

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Thanks for advice, she was meant to have had B12 injection every 3 months but the GP surgery receptionist said she couldn't fit her in for her next one so she has to wait until a slot is available. Her vitamin D level was originally under 30 yes. Her folic acid is 5mg once daily but she hasn't been taking it because she didn't know whether she was meant to be taking it before or after her next injection of B12.

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Sadii

Ask on the PA forum about the timing of the folic acid in relation to the B12 injections.

I do find it unacceptable that someone needing B12 injections at regular intervals is forced to wait. She should be having them at 3 monthly intervals and she has already waited 6 months from her last one. It's just not on. I would have a word with the Practice Manager, say she is way overdue and she needs her next injection immediately and you want her fitted in every 3 months without fail. This is appalling!

As for the Vit D, she was let down by not being given the loading doses. I would just do as I said, increase to 9000iu daily and change to an oral spray.

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Please post this query about when to take folic acid on the HealthUnlocked Pernicious Anaemia forum. Give some background and B12, folic acid results and thyroid condition etc. They may also be able to help with advice for what to do when B12 injections are too spaced out. They are the experts in B12 deficiency.

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I run a support group in the Midlands but think that there is a group in Bristol, if you have s search.

Hopefully your GP can help you fight this.

Please assure her that we can all help her! There are many of us who have got our lives back!

Sue

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You've had excellent practical advice, but I just wanted to say it's so easy to feel hopeless when trying to battle against doctors to geth proper treatment. It's a form of abuse and torture really. But at the same time, depression, anxiety, and particularly low self esteem are all hypothyroid symptoms.

These will have hit your daughter hard once this large dose reduction kicked in. Personally I find day 3 is when it really hits me with reduced T3.

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