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Nicolakerri profile image
36 Replies

Where do I go from here I am 22 years old and I feel so unwell thank you

Thyroid peroxidase antibodies 447.5 (<34)

Thyroglobulin antibodies 1200 (<115)

TSH 7.2 (0.2 - 4.2)

Free T4 10.8 (12 - 22)

Free T3 2.5 (3.1 - 6.8)

Ferritin 7 (15 - 150)

Folate 1.3 (2.5 - 19.5)

Vitamin B12 121 (180 - 900)

Vitamin D total 10.2 (>25)

Zinc 9 (11 - 23)

Magnesium 0.69 (0.70 - 1.00)

Selenium 0.81 (0.89 - 1.65)

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Nicolakerri profile image
Nicolakerri
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36 Replies
Greybeard profile image
Greybeard

Hi Nicola, has your doctor seen these very poor results? Have you been prescribed anything?

Nicolakerri profile image
Nicolakerri in reply to Greybeard

Hi thanks nothing been prescribed

Nanaedake profile image
Nanaedake

You have Hashimotos thyroiditis and your TSH is too high. Are you taking thyroid medication? Your vitamin levels are dangerously low so no wonder you feel so ill. What has your GP done about these and when did you get these results?

Nicolakerri profile image
Nicolakerri in reply to Nanaedake

Hi thanks I have not been given any thyroid medication and GP has done nothing about results saying they are all only slightly out

Nanaedake profile image
Nanaedake in reply to Nicolakerri

Please find yourself another GP.

Your ferritin is terrible and you are hypothyroid. YOu need to see another GP immediately. Your TSH is above range. Some doctors in the UK do not want to treat until TSH is above 10 but in your case, your hypothyroidism coupled with thyroid antibodies and low nutrient levels are causing you terrible symptoms and you need treatment fast or you will become progressively unwell.

GP's do not seem to take our symptoms seriously. Find a way to tell your new GP on a scale of 1-10 how bad you feel. If you can compare it to some other time when you've been ill but now feel even worse than it might help. Ask for a trial of levothyroxine. However, you may react badly to levvothyroxine with such low nutrient levels so you also need to address these.

Are you in the UK? If so there are guidelines your GP should follow and as your vitamin D is under 30 your GP should prescribe loading doses of vitamin D and then an adequate maintenance dose. You need to aim for a level around 100nmol. Ask your GP for the correct treatment according to the NICE guidelines or local CCG guidelines. Local CCG guidelines will be similar.

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

The vitamin D Council gives some advice about levels to supplement if your GP cannot prescribe sufficient amounts of vitamin D3.

You may wish to take magnesium and K2-MK7 with vitamin D3 in order to absorb the vitamin D effectively. Magnesium citrate is ok but there are other choices for magnesium.

naturalnews.com/046401_magn...

Have you got symptoms of B12 deficiency because if so, I advise you to post your B12 and folate results along with an outline of your thyroid condition and symptoms, low ferritin etc on the HealthUnlocked Pernicious Anaemia forum healthunlocked.com/pasoc and ask their advice about what your GP should be doing. Really, it looks like you need further investigations to rule out pernicious anaemia. Your GP should check for intrinsic factor antibodies.

B12 symptoms of deficiency

b12deficiency.info/signs-an...

B12 The Guidelines Doctors follow

onlinelibrary.wiley.com/doi...

onlinelibrary.wiley.com/doi...

Ferritin needs to be at least 70 or mid-range for thyroid hormone to function properly. Have you had a full iron panel because if not, your GP needs to do one.

Iron deficiency anaemia NICE guidelines

cks.nice.org.uk/anaemia-iro...

The importance of vitamins and thyroid function

americannutritionassociatio...

Nicolakerri profile image
Nicolakerri in reply to Nanaedake

Ok meant to be taking levothyroxine but it was stopped in May 2014, diagnosed hypothyroid 8 years ago

Nanaedake profile image
Nanaedake in reply to Nicolakerri

Who stopped your levothyroxine?

Nicolakerri profile image
Nicolakerri in reply to Nanaedake

The GP stopped it, I was taking 150mcg levothyroxine at the time

Nanaedake profile image
Nanaedake in reply to Nicolakerri

What were your blood test results when it was stopped and what was the reason given?

It's very likely that stopping your levo has trashed your vitamin levels and helped to cause these deficiencies.

Nicolakerri profile image
Nicolakerri in reply to Nanaedake

TSH 4.6 (0.2 - 4.2)

Free T4 15.7 (12 - 22)

Free T3 4.0 (3.1 - 6.8)

Investigating Addison's disease

Nanaedake profile image
Nanaedake in reply to Nicolakerri

And what was the outcome of the investigations for Addisons disease?

With such low vitamin levels it would not be surprising that adrenals would not function very well.

Nicolakerri profile image
Nicolakerri in reply to Nanaedake

Cortisol came out low 320 (140 - 700) DHEA 2.3 (2.7 - 7.5) but nothing prescribed I really think I need more investigation

Nanaedake profile image
Nanaedake in reply to Nicolakerri

I'm afraid I really don't know anything at all about Addisons disease but if Addisons is suspected then a GP would not start a patient on levothyroxine. What made the GP investigate an adrenal problem? Or was it your suggestion?

What diagnosis did the GP give you following his/her investigations? Did he/she offer to refer you to a specialist or is there no indication for referal?

With all your vitamin levels so low your adrenals will struggle to function efficiently. What are you doing about your diet and supplementation and what has the GP offered?

Nicolakerri profile image
Nicolakerri in reply to Nanaedake

Endo suggested she investigate Addisons and the GP gave me a diagnosis of possible Addison's disease. She referred me urgently to endocrinology where I had cortisol, short synacthen test and DHEA all taken. My diet is ok I think, I eat fruit and veg and GP has not offered me any supplementation

Nanaedake profile image
Nanaedake in reply to Nicolakerri

See my reply below - with Hashimotos, even the most nutritious diet will not be enough to address deficiencies due to gut dysfunction caused by autoimmune disease. You do need to find another GP if you have not been offered supplementation or find out why the GP is not offering supplements. You also need clarity on whether you have Addisons disease or not although I rather think your Endo does not know what she/he is doing and has rather passed the buck to your GP.

Cooper27 profile image
Cooper27 in reply to Nicolakerri

What was the reason for stopping it?

Nicolakerri profile image
Nicolakerri in reply to Cooper27

TSH 4.6 (0.2 - 4.2)

Free T4 15.7 (12 - 22)

Free T3 4.0 (3.1 - 6.8)

Nanaedake profile image
Nanaedake in reply to Nicolakerri

These results show you were undermedicated so why did GP stop the levothyroxine?

Nicolakerri profile image
Nicolakerri in reply to Nanaedake

This was around the same time I had the adrenal tests my GP said the levothyroxine would be affecting my adrenals so he asked me to stop taking the levothyroxine

Nanaedake profile image
Nanaedake in reply to Nicolakerri

Ask the GP what he/she found out about your adrenal gland function.

Ask what blood test results show whether you do or do not have adrenal dysfunction and why.

If the GP does not think you have Addisons disease then ask him/her what she thinks the cause of your symptoms are.

We see many people on this forum with low vitamin levels and this is common with Hashimotos thyroiditis. All are symptomatic with similar symptoms to yourself so I would ask the GP to help you address your vitamin deficiencies, as a starting point.

You may need investigations to rule out pernicious anaemia and you probably need to go gluten free and see if it helps.

SlowDragon has good links on the connection of gut function with hashimotos. Poor gut function can also trash vitamin levels so you need to read up and make some dietary changes to see if it helps. Your GP can help you with your deficiencies and you can ask forum members here for advice on vitamin supplements your GP cannot give.

With thyroid disease we really need to take our health into our own hands and not rely on doctors to sort it all out. They know very little about thyroid disease. You'll learn more about how to manage your disease on this forum. You also need to help yourself by learning as much as you can and reading up on your condition. You can post as many questions as you like on this forum as we're all here to help each other. Before long you'll be helping other people back to health too.

Greybeard profile image
Greybeard

I think a new gp is in order.

Nicolakerri profile image
Nicolakerri

I am getting a lot of headaches and feel really dizzy and tired ears ringing periods draining the life out of me fed up of being like this I am dragging myself into work every day like this

Greybeard profile image
Greybeard

See a different gp, put on your most stroppy frame of mind and demand to be treated for your very poor blood results.

Nicolakerri profile image
Nicolakerri in reply to Greybeard

Will do this thank you

Clutter profile image
Clutter

Nicolakerri,

See another GP at your practice or change GP practice. Both FT4 and FT3 are below range and TSH is considerably over range so you should be prescribed Levothyroxine, 50mcg - 75mcg initially.

B12 and folate are deficient. Your GP should initiate B12 injections and should prescribe 5mg folic acid which should be taken 48 hours later. GP should also check intrinsic factor to rule out Pernicious Anaemia causing B12 and folate deficiency. healthunlocked.com/pasoc are the experts on PA, B12 and folate.

Vitamin D is severely deficient. Your GP should refer to local guidelines or the cks.nice.org.uk/vitamin-d-d... Do NOT accept a prescription for 800iu which is a maintenance dose prescribed after vitD is replete >75. My GP prescribed 40,000iu daily x 14 followed by 2,000iu daily x 8 weeks which raised vitD from <10 to 107. Vitamin D should be taken 4 hours away from Levothyroxine.

Zinc, magnesium and selenium are also deficient and require supplementing.

I would be inclined to write a letter of complaint to the practice manager. Your GP's lack of treatment is neglect.

Nicolakerri profile image
Nicolakerri in reply to Clutter

Ok thanks meant to be on levothyroxine but GP stopped it May 2014. Was taking 150mcg levothyroxine at the time

Clutter profile image
Clutter in reply to Nicolakerri

Nicolakerri,

Why on earth was it stopped?

Nicolakerri profile image
Nicolakerri in reply to Clutter

I had low cortisol and below range DHEA results at the time but I really think I need more invesitgation

Clutter profile image
Clutter in reply to Nicolakerri

Nicolakerri,

But that has nothing to do with Levothyroxine for underactive thyroid. Please change your GP. It appears your current GP is willing to let you die of hypothyroidism and severe vitamin and mineral deficiencies due to lack of treatment.

Nicolakerri profile image
Nicolakerri in reply to Clutter

I meant to add the GP seemed to think the levothyroxine was affecting my adrenal function

Clutter profile image
Clutter in reply to Nicolakerri

Nicolakerri,

Then the proper course of action would have been to address your adrenal dysfunction and then resume prescribing Levothyroxine, not to ignore your thyroid results and vitamin and mineral deficiencies.

SlowDragon profile image
SlowDragonAdministrator in reply to Nicolakerri

Only because you were seriously under medicated

Will add more info in morning

SlowDragon profile image
SlowDragonAdministrator

Hi Nicola

Your high antibodies confirm you have Hashimoto's, also in UK more commonly called autoimmune thyroid disease

Hashimoto's can upset adrenals. But it must be treated as, it's the reason the adrenals are getting worn out.

You need an endocrinologist who specialises in adrenal and thyroid problems. Roughly where in UK are you?

Email Thyroid UK for list of recommended thyroid specialists

please email Dionne:
tukadmin@thyroiduk.org

Can you see a different GP in the practice urgently

You need to be started on Levothyroxine. Probably extremely slowly. Normally we start on 50mcg. You may need a few weeks on 25mcg and increase by 25mcgs steps slowly.

Bloods are retested 6-8 weeks after each dose increase

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

Dose is increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Your vitamins are extremely and dangerously low and must be treated. They are low BECAUSE your Hashimoto's is not being treated

Low B12 can cause permanent neurological damage

Post all these results on PAS healthunlocked for advice on B12

healthunlocked.com/pasoc

Here also is detailed supplements advice from SeasideSusie on Low vitamins due to under medication or in your case no medication

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

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

Low vitamin levels affect Thyroid hormone working

Obvious your vitamins are terrible and must be corrected

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...

8 years ago you remained unwell because you were not adequately treated on 150mcg. Dose should be increased until TSH is around one (or less) and FT4 towards top of range

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...

But you need to get started on Levothyroxine (T4) first, get TSH down and vitamin levels optimal

Gluten free diet very likely essential

If FT3 remains low then you may need addition of small dose of T3

Come back when you have seen different GP and let us know how you are getting on

Nicolakerri profile image
Nicolakerri in reply to SlowDragon

I am under an endocrinologist at the moment who says symptoms not thyroid related. I am from Bristol

SlowDragon profile image
SlowDragonAdministrator in reply to Nicolakerri

Changing to strictly gluten free diet and getting vitamins optimal will soon show it is a thyroid problem

You will need masses of supplements

All your results are below range

You have Hashimoto's and severe low B12

Have you been tested for coeliac? If not get it tested

You urgently need a second opinion

silverfox7 profile image
silverfox7

I've not read through all your replies but any doctor who receives results like your and does nothing what's well I like to think I'm too polite to put what I'm thinking but you must distance yourself from him! He obviously hasn't a clue and no intention of finding out what he should be doing.

Is there another doctor in the practice you can try? If not I would show your results to the pharmacist and ask if they know of a better GP in the area with better knowledge of thyroid medication and correcting vitamin deficiencies.

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