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Thyroid UK
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Advice please! Tired of feeling ill!

Hi Guys

I am feeling really rather frustrated with my GP - I initially went to my doctors surgery last June (saw the nurse practitioner - she was very good) I was having palpitations, anxiety, extreme joint pain, and chest pain (among other symptoms!) and my blood pressure was through the roof.

I was sent straight to the hospital as my blood pressure was so high and the initial thoughts was that it could be angina due to the nature of the pains I was having (I'm only 41!) - after all the scans etc, I am pleased to say my heart is in good health, however in the mean time, the first bloods I had done came back as abnormal in the way of my thyroid - it was actually slightly overactive which could have been causing me the trouble possibly?

Result - TSH - 0.07 (0.2 - 4.0), T4 19.6 (11.0 - 22.6)

I then waited 4 months for them to re test me in case it was a sporadic result and this result came back as underactive thyroid and my antibodies were high - I felt dreadful at this point - weight gain, joint pain, muscle weakness, memory loss, brain fog and a whole lot more. I took a call from the doctor to tell me this, he explained that sometimes you can go from overactive to underactive due to a burn out and said take this pill once a day and come back in 2 months - the call lasted all of 2 minutes with only a very brief description.

Result - TSH 7.0 (0.2 - 4.0), T4 9.7 (11.0 - 22.6), Antibodies >1300 (<60)

Since day one of taking 50mg levothyroxine though, I have felt like I have a football in my upper abdomen and feel sick all of the time - Its so bad that even other foods seem to make it worse now - especially milk and I feel absolutely dreadful all day. Because of this I have stopped drinking milk. I have also been very strict on taking my tablet on an empty stomach with water and not having anything for at least 2 hours after taking it as I wanted to get maximum absorption in the hope of feeling better - for the last 3 months whilst waiting for my new bloods to be done I have felt absolutely dreadful from this and also still have severe muscle aches/weakness/memory loss/flaky nails/weight gain/cold constantly etc. I had my new bloods done last week and they only did my TSH level (nothing else - is this right?) which showed I am now within range but why do I feel so dreadful still?

Result - TSH 1.0 (0.2 - 4.0)

I arranged a phone appointment last Friday with my doctor regarding reacting with the levothyroxine and he just sounded like he couldn't be bothered to talk to me and even admitted he was doing 3 things at once whilst talking to me. He said to stop taking the tablet for 2 weeks and see if it made a difference and then go and see him - I asked him if there are any other tablets I could take instead if it was that and he said 'Yes but I can't give it to you as its too expensive.' Well - I felt really dismayed.

So what do I do if I am having a reaction to the tablet (which I know I am as the very first day I didn't take it I didn't get the swelling and sickness feeling). Do I suffer the extra illness of being so uncomfortable and feeling sick all of the time or do I go un medicated? Are there any other options?? I just don't understand why I feel so ill still if I am in range now? I think I am going to try and get referred to an endo as I'm not sure if my doctor knows much about thyroid problems and really doesn't seem helpful at all.

Sorry for the long post but I am new to all of this and just don't get why I feel so ill still and am getting so frustrated. Any help on my results and situation would be much appreciated! Also - can anyone confirm if I have Hashimotos from my results above as my doctor hasn't explained hardly anything? Thank you for your time!

18 Replies
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Do not stop taking Levo, you need to get full private tests to show what's actually going on while on constant dose

NHS testing is useless. Thousands on here have to get private blood tests

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

Private tests are available

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven 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

Come back with new post once you have results

Food intolerances are common as result of the autoimmune thyroid disease and/or the Levothyroxine

What brand of Levo are you taking? Lots of patients find they can only get on with one or possibly two brands

Your high antibodies confirm you have Hashimoto's also called autoimmune thyroid disease

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 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

But dairy is also pretty common too. You may need to exclude both dairy and gluten for a while, then introduce one back and see what reaction you get

You may only be lactose intolerant. You can buy lactose freee milk, cheese etc

Or casein is common reactor. Only in cows milk. Not sheep or goat

Lots about dairy etc on the Thyroid Pharmacist website as she is dairy intolerant

Also 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, if not been done already

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...

Typical posts showing Low vitamins due to under medication

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Typical post showing Low vitamins causing low TSH high FT4

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

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...

T3 is the expensive medicine your GP muttered about. It's cheap as chips elsewhere in the world.

UK being rippped off

Many have had prescriptions stopped because if this and now self medicate

You will need to get dairy/gluten sorted, good vitamins first.... but if FT3 remains low adding small dose of T3 may be necessary

Read as much as possible about Hashimoto's

Most Medics here are in the dark ages

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Wow - thank you so much for such informative information - the doctor says he will do a coeliac test 'if I want' and said that vitamins aren't necessary?? I think from reading your post above that vitamins play a big part though so I will push him on these tests too. Thanks again - it is much appreciated. :-) I think I will get a book or something about Hashimotos too - its good to know what it is I have now.

I will post back when I have seen him again in a few weeks. :-)

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Recommend watching the Thyroid Secret (on YouTube I think)

Hashimoto's the root cause by same girl Isabella Wentz, but her website has absolutely masses of info too

All the links I gave you have tons of info

Read people's profile stories too

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Just had a look at Isabella Wentz's site and it looks so good! I think I will be on that all night reading now! Within the first page I clicked on it was the exact same scenario as how my own journey started. Gosh this site is great - thanks so much for your help! :-)

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If your reacting to milk then your likely dairy intolerant hence the lactose in the levo will react too

You also need

Ferritin

Folate

B12

Vitd3

Tested and its possible your b 12 is so bad that pernicous aneamia may be involved

Unless all 4 above are at least midway in their ranges your body also cant utilise the levo

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Thank you so much for your reply - within half an hour on here I feel much more informed and positive. I really appreciate it :-)

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Sadly we know far more than GPs and Endos ever will. Do a search for the recent paper by Dr Midgeley its on thyroiduk.org website and in forum on tpauk.com

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It is a big learning curve for patients who have had a dysfunction of their thyroid gland.

It has probably taken years for us to gradually become hypothyroid that it is really un-noticable until we eventually go to the doctor.

Before blood tests and levothyroxine were introduced in the 60's I believe we were all diagnosed upon our clinical symptoms. Nowadays I doubt many doctor know any at all and their whole emphasis is put on a TSH result - TSH is from the pituitary gland and is called 'thyroid stimulating hormone' which tries to flag the thyroid gland to produce more hormones. Rarely do doctors test the Free T4 and Free T3 and it is usually if we have both in the lower part of the range we don't feel so good. T4 is inactive and has to convert to T3. T3 is the Active Thyroid Hormone and enables our body to function but it has to have sufficient as it is needed in our millions of T3 receptor cells.

The following:-

Antibodies >1300 (<60)

proves you have an Autoimmune Thyroid Disease called Hashimoto's due to your very high antibodies. These attack the gland and wax and wane until you are hypothyroid but treatment is the same as for hypothyroidism. Going gluten[-free can help reduce the antibodies. Sometimes you can feel hyper if the antibodies are 'dumped' into your system (I have read this from another post) - antibodies do wax and wane.

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

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

Hashimoto's is the commonest form of hypothyroidism.

Sometimes when we begin a dose of levothyroxine we don't feel so well but as dose is increased by 25mcg every six weeks we begin to feel better. Unfortunately, being hormones it's not like having a headache when a paracetamol works more or less immediately.

As your TSH is 1 but you are still very symptomatic, it could be that your antibodies are high or the levo you are taking at present doesn't agree with you so I'd ask the pharmacist does he have another from a different manufacturer. Sometimes the fillers/binders in some medications cause a problem for us.

Also you can take one anti-histamine one hour before you take your next dose of levothyroxine and if you don't have a reaction then you need to change the that one to another make. Sometimes we are sensitive to fillers/binders in it.

Doctors seem to be completely unaware that it is symptoms that are causing us problems.

The test you should ask for next time is TSH, T4, T3, Free T4, Free T3 and antibodies. The tests should always be at the very earliest possible, fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and the test and take afterwards. This helps keep the TSH at its highest and prevents a wrong adjustment of he dose.

If GP or lab wont do all of the above, you can get those not tested by a private labe. We have two and they do home pin-prick tests.

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

You also need B12, Vit D, iron, ferritin and folate tested.

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Thanks so much for your help shaws - it is much appreciated. When I questioned the doctor on why they only did the TSH test on my last bloods, he said the others were only needed on the confirmation tests. He also said that vitamins weren't necessary to do either - I wonder if its all a money saving exercise?

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Yes, it is.

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Print this article out and circle the box at the end of article re vitamins and give it to your GP

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...

They already suggested you might need testing for coeliac.

Anyone with undiagnosed coeliac has terrible vitamins, as does anyone with gluten intolerance (i.e. Most of us with Hashimoto's)

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Thank you for your help SlowDragon. 😊

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You do not have hashimotos

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Lizbet ..you are wrong results scream Hashimotos

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lizbeth5 The OP's antibodies are in excess of 1300 - why do you believe she doesn't have Hashimoto's?

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Would you prefer to call it 'autoimmune thyroiditis'? Or do you think it's normal to have antibodies of over 1300 (<60)?

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Why on earth would you say that? She clearly does

TPO 1300

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Hi Guys

So I went to see the doctor last week after staying off Levothyroxine for 2 weeks at his request as I was reacting really badly to it (at this time my TSH was 1.0 apparently normal but they didn't even do the other thyroid tests so I found this to be useless and I was still in a lot of pain all over my body with many, many other hypo symptoms) - I felt better within 24 hours of stopping the levo in terms of no bloating/nausea/breathlessness/mucus in throat. It would seem I am quite allergic to this tablet! When I told him this, he said 'I have told you I cant prescribe the other drug as its too expensive and you won't get an appointment with an endo for absolutely months and months and months ' he was arrogant with me and uncaring and spoke to me like he just couldn't be bothered dealing with me.

I ended up shouting at him and bursting into tears and saying well what am I supposed to do - would he give a needed drug that contained nuts to a nut allergy sufferer? After shouting at him saying I felt like I was getting nowhere with him and I just feel so ill, he apologised to me then started to listen. I mentioned speaking to you guys and he didn't even know about the vitamins etc. he then looked on the system and low and behold he found me a fast track appointment to see an endo in 5 weeks time.

In the mean time, he agreed to do the bloods for the vitamins mentioned and also a coeliac test (as I am also struggling to eat loads of different foods) and liver function test and another thyroid test (he said he can only do TSH though as I am already diagnosed!) he said that the endo would be able to do T3 test etc. though. I asked him what to do in the mean time with the levo and he said 'well - you'll just have to be ill with it until you see the specialist' I had the blood tests, then took the levo for the first time yesterday and was severely ill - I could hardly breathe due to fluid around my abdomen and I was on the loo within 20 minutes. I then felt breathless and really nauseous all day. I am also struggling to eat/drink anything at all with milk in it now - it gives me the same symptoms.

I phoned the surgery and they advised me to just stop taking it so now I am unmedicated for 5 weeks until I see the specialist. So - please see below my new results for everything (I'm just waiting for the coeliac test to come back now) - any advise would be gratefully received as your help last time has helped me to get him to do something!

TSH is now 1.6 (0.2-4.0) (he wouldn't do the other tests and I have been off levo for 3 weeks now - previously 1.0 whilst on levo then before that it was 9.7)

B12 452ng/L (211 - 911)

Ferritin 143 ug/L (10-291)

Folate 2.9ug/L (3-14.4)

Vit D 14.4 nmol/L (<30 indicates deficiancy)

Serum total bilirubin level 13 umol/L (<21)

Serum alkaline phosphatase level 87 iu/L (30-130)

Serum alanine aminotransferase level 128 (<40)

Serum calcium level 2.23 (2.2 - 2.6)

Serum albumin level 45 g/L (35-50)

Serum adjusted calcium concentration 2.13 mmol/L (2.2-2.6)

Serum inorganic phosphate level 0.82mmol/L (0.8-1.5)

Thanks in advance! :-)

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