Thyroid UK

Feel like I am going mad - no change in dose for 7 years

Hi I am newly registered, I am 30 years old and I have hypothyroidism diagnosed in 2010 and I haven't had a change in dose (25mcg levothyroxine) since this time. The only thing I can think of as to why my dose hasn't been changed is because I have cardiomegaly (enlarged heart) found on a chest x ray in 2016. My GP and endo are saying I have mental illness based on these symptoms:

Vertigo/lightheadedness

Constipation

Mouth ulcers and sores

Losing hair

Tiredness

Muscle cramps

Looking tired

Flaky and splitting nails

Heavy periods

Am I going mad? Thank you

TSH 7.6 (0.2 - 4.2)

FT4 12.9 (12 - 22)

TPO ANTIBODY 1073.5 (<34)

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Posts like yours raise my hackles at the ignorance of both doctors and endocrinologists in diagnosing/treating hypothyroid patients.

One doctor, now deceased, foretold that we are in a parlous situation if hypo and more relevance is given to a dot on a piece of paper than listing the patients clinical symptoms. You will be able to tick off quite a few I sense. Doctors use to know all of the symptoms now they only look at the TSH and T4 both are useless in diagnosing without all the other ones listed below.

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

25mcg is an incremental dose, i.e. the starting dose is 50mcg with 25mcg increments after each six weekly blood test until TSH is 1 or lower and a Free T4 and Free T3 in the upper part of the range.

They will diagnose a mental illness because they are imbeciles and our brain and heart need the most thyroid hormones to enable our bodies to work in unison, not dysfunction due to neglect of the medical profession who don't know one clinical symptom.

If you can afford a private blood test we have two recommended labs. You need a Full Thyroid Function Test (if we were in the USA I think we could sue these doctors) that is TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

They are home pin-prick tests and have to be at the very earliest possible, fasting (you can drink water). If you were taking thyroid hormone replacements (usually levothyroxine) you'd allow a gap of 24 hours between last dose and test and take afterwards.

Levo should be taken when we get up with one full glass of water and wait an hour before eating. Food interferes with the uptake.

Ask GP to do these and say you've taken advice from the NHS Choices for information/advice about dysfunctions of the thyroid gland, if you are unable to afford a private test. Many cannot work due to their illness and bad treatment by doctors.

You doctor should definitely test B12, Vit D, iron, ferritin and folate. Most probably these will also not be at an optimum level.

You are not alone and all of us on this forum are outcasts (in a way) as we have had to find our own solutions with the help of all on the forum who have gone through similar experiences. Doctors are quite willing to hand out anti-depressants but not thyroid hormones at an optimum for the patient.

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Hi I think the reason my dose hasn't been raised is because I have heart failure and damage to the heart and my latest results show under medication

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Did you have heart failure before you were diagnosed as hypothyroid?

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No, the first I knew about it was 2016. I had a chest x ray which showed I had an enlarged heart

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Lizzie1987 I'm dismayed to hear of your circumstances, but as Shaws says, we have new members arriving on the forum most days with tales of frank hypothyroidism and/or Hashimoto's Disease, the blood test results which demonstrate this, and a very similar list of symptoms - but no treatment and a doctor's suggestion that all problems are in the patient's head. But no, you are not going mad.

Cardiomegaly is one complication of untreated or under-treated hypothyroidism. Many of us have heart problems (various presentations) which abate with proper treatment. You are very young indeed to have heart failure, but I recommend you read a book by Dr Mark Starr, 'Hypothyroidism Type 2' which deals in some detail with the cardiac complications of hypo.

You also need to check that your nutritional status is optimal in a number of aspects. I suggest you read responses by SeasideSusie to other people on this subject.

Read as much as you can about hypothyroidism.

Good luck.

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Hi and thanks my vitamin and minerals have been posted and I received treatment for iron in 2016. I am treated for vit D deficiency and I am planning to speak to GP next week about why my ferritin and B12 and folate are so low

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Lizzie, I can't find your nutrients results but if your B12 and Folate are low then ask for testing for Pernicious Anemia. You also have low Ferritin? Ask for urgent referal to Haematology for all three? GP should have further investigated and treated.

With regards to Vitamin D - did GP prescribe Loading Doses of 280,000 to 300,000 IU to be taken in split doses over several weeks ? Followed by a daily maintenance dose of at least 800 IU or even as much as 1000 to 2000 IU?

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I can ask haematology for all 3 to be addressed yes. GP prescribed me 800iu because my level was initially 45.5 but this has decreased so will need loading doses I think

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Well, an enlarged heart can be a result of lack of proper treatment for hypo ...

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P.S before blood tests were introduced in the 60's we were diagnosed upon our clinical symptoms alone and given NDT (natural dessicated thyroid hormones) which was increased until we had relief of symptoms.

Advice to doctors is that they should only test TSH (thyroid stimulating hormone - from the pituitary gland) and in the UK we have to wait until it reaches 10 before they will consider prescribing (some will if TSH goes over range which is around 5). In other countries we are diagnosed if TSH is 3+.

25mcg of levo is not a joke when it keeps the patient very unwell.

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Why have you been put on only 25mcg and left on it? What reason were you given?

Did you have any tests to check your Adrenals?

Have you got any other conditions or on any other medications ?

Have you had nutrients levels tested for

Vitamin D

Calcium

B12

Folate

and Ferritin?

If not ask GP to do them and post results on here.

Did you have Thyroid Antibodies tested? Do you have Hashimoto's?

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The only reason I can think of is because I have heart failure and it was found in 2016. I had a chest x ray which showed I had an enlarged heart

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My Mum had a hugely enlarged heart. She had Congestive Cardiac Failure. She was on 75mcg of Thyroxine.

I do wonder if she had been on Thyroxine sooner, if she would ever have developed so many heart and other conditions. It was quite late in life (her late 70's ) that she was prescribed the Thyroxine.

You need to get your TSH down and your FT4 up.

You need adequate dose -increased by 25mcg at a time following retesting.

You need all your Nutrients levels tested and sorted.

Is there anyone you can take with you to see the GP?

Your general health should improve when you eventually get on to correct dose.

I had heart problems before I was diagnosed and treated.

Your diagnosis is :

Hashimoto's Autoimmune Thyroiditis and Hypothyroidism

and it's the Hypothyroidism that you need appropriate treatment for.

NOT mental illness.

xx

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FERRITIN 32 (30 - 400) No longer taking iron since my level was replete in 2016 after iron infusion

FOLATE 1.7 (2.5 - 19.5)

VITAMIN D TOTAL 38.5 (25 - 50 DEFICIENT) Taking 800iu

VITAMIN B12 205 (190 - 900)

There is no one to take with me to the GP. My partner is aware I am feeling so unwell but he refuses to come and support me

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Ask for testing for Pernicious Anemia. If you are already known to Haematology - give them a call? ?

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TSH 7.6 (0.2 - 4.2)

FT4 12.9 (12 - 22)

TPO ANTIBODY 1073.5 (<34)

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Lizzie

We also need adequate Levothyroxine to protect our Pituitary Gland from overworking by producing lots of TSH. So TSH Must be brought down much lower .

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You have an autoimmune thyroid disease commonly called Hashimoto's. The antibodies attack your gland until you're hypothyroid but treatment is the same. Antibodies attack your gland and wax and wane until hypo. Going gluten-free can help reduce the antibodies and attacks.

TSH too high - aim is 1 or lower. I agree with trelemorele about the neglect that you should investigate further with a no-win no-fee lawyer.

All vitamins/minerals have to be optimal. B12, Vit D, iron, ferritin and folate. B12 in particular if deficient can cause us to have dementia plus other serious complications. Your doctor has to test for pernicious anaemia - serious if undiagnosed/untreated. The aim is a B12 of 1,000 to try to prevent dementia.

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Lizzie, it would be helpful if you could put some of your medical history into your Profile so that members will be aware of previous/present conditions. You just have your name at present :)

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Have done this now

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Being under-medicated is just going to make your heart failure worse. If your hypothyroidism was treated adequately, including optimising your Free T3 then your oversized heart will shrink and you could even get rid of the heart failure.

If your doctors are so useless that they think you can "think yourself" into having all the symptoms you list as a result of mental illness, then you need to ditch them and start treating yourself. They will never make you well.

Low T3 is a known finding in heart disease.

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Your severely under medicated and have Hashimoto's also called autoimmune thyroid disease

The aim of Levothyroxine is to increase the dose in 25mcg steps (retesting each time after 6-8 weeks on new dose) until TSH is around one and FT4 towards top of range and FT3 at least half way in range

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 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...

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 dionne.fulcher@thyroidUK.org. print it and highlight question 6 to show your doctor.

Being severely hypo and Low T3 is possibly the cause of heart disease.

hypothyroidmom.com/is-your-...

endocrinenews.endocrine.org...

See if you can get vitamin testing and FT3 from GP.

Private tests are available (essential to get FT3 tested)

thyroiduk.org.uk/tuk/testin...

Vitamindtest.org.uk - £28 postal kit

Medichecks or Blue Horizon are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

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

Link about antibodies

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

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Print this list of symptoms off, tick all that apply and take to GP

thyroiduk.org/tuk/about_the...

See Box 1. Towards end of article

Some possible causes of persistent symptoms in euthyroid patients on L-T4

You will see low vitamin D, folate, ferritin and B12 listed

onlinelibrary.wiley.com/doi...

You need a new endo and quite likely a different GP

Is there different GP you can see?

Ask for 25mcg dose increase in Levo, testing of TSH, FT4 and FT3, plus vitamin D, folate, ferritin and B12

Email Thyroid UK for list of recommended thyroid specialists (open Jan 3rd)

dionne.fulcher@thyroidUK.org

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Hi there is another GP I can see, I will post vitamin and mineral levels now

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Lizzie

If this was me, on such a poor medical treatment, I'd be getting no win no fee lawyer and sue all those who let you down during 7 years and caused heart problems due to medical negligence.

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