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Thyroid UK
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Help! They want to reduce my dose!

Long ish story but here we go. Back in September 2016 I felt really good and was even managing to lose some weight - on 175mcg of Thyroxine. Blood test and Dr decides it's a bit low so needs some tweeking. Stopped 25mcg on Saturday and Sunday with disastrous results!

Back to living in a fog with no energy, hair falling out, muscle pains in legs, sleeping for 3 maybe 4 hours during the day, nails splitting and breaking and worst of all back to weight gain!

Next appointment in January I got them back and a blood test in March showed dreadful results.

I had an increase of 25mcg for all the other tests until October when I had a 12.5 increase which seemed to be a magical number because I now feel hooooman again but as the last test is below 1 they want to remove my last dose increase as they think the amount I am taking is too high! I am on 262.5mcg per day.

Serum TSH level 0.48 mU/L (0.27 - 4.2mU/L) 09-Feb-18

Serum TSH level 1.8 mU/L (0.27 - 4.2mU/L) 02-Oct-17

Serum TSH level 3.8 mU/L (0.55 - 4.8mU/L) 26-Jul-17

Serum TSH level 3.7 mU/L (0.55 - 4.8mU/L) 24-May-17

Serum TSH level 2.3 mU/L (0.55 - 4.8mU/L) 20-Mar-17

Serum TSH level 3.5 mU/L (0.55 - 4.8mU/L) 05-Jan-17

Serum TSH level 0.32 mU/L (0.55 - 4.8mU/L) 23-Sep-16

I know I am within range but they are still dogmatic about taking my life - sorry dose away.

Can anyone give me ammunition to fight this? Something written down about being under 1 is ok.

Sorry this is long but I am up against a nurse that knows everything but has still never met me!!

Thanks in advance.

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Do you have Hashimoto's also called autoimmune thyroid disease diagnosed by high thyroid antibodies?

Have you had vitamin D, folate, ferritin and B12 tested recently.

It's impossible for GP to say your over treated by just testing TSH

Essential to test FT4 and FT3, but NHS usually refuses to test FT3

Private tests are available and 100's on here forced to use these to get correct treatment

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. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's

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 at

Tukadmin@thyroiduk.org

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

Professor Toft recent article saying, T3 may be necessary for many Otherwise we need high FT4 and suppressed TSH

rcpe.ac.uk/sites/default/fi...

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Hi SlowDragon

Thanks for your reply. I have emailed Dionne for the information.

I have no idea which type of hypothyroidism I have. My surgery will only test TSH and not vitamins and minerals at all!!! I don't have the funds for private testing at the moment - pensions just don't go far!

It seems that my surgery isn't interested in which type of Hypothyroidism you may have - they just throw thyroxine at it and see what happens!

Its not my Dr that is treating me - its the practice nurse!

If I get no satisfaction from the consultation with the nurse I will be making an appointment with my Dr - at least she has seen me and knows who I am!

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Hashimoto’s is cause of 80-90%

Strictly gluten free diet helps if it is Hashimoto’s

Ask GP for coeliac test before trying it and to test vitamins

Antibodies test plus FT3 is £59 - sometimes on offer at £49

Whole lot inc vitamins is £99

Or sometimes £79 when on offer

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I will start saving!

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Sometimes we have to play them at their own game.

FT4 and FT3 are the thyroid hormones, TSH is a pituitary hormone which stimulates the thyroid to produce thyroid hormone if it detects that it is low. When there's too little thyroid hormone then TSH will be high, when there is enough thyroid hormone TSH will be low. You are taking replacement hormone, your pituitary recognises this so doesn't need to stimulate your thyroid to produce any hence TSH is low.

So now if your doctor wants to lower your dose, you say that it's your FT4 and, more importantly FT3 that shows whether or not you are overmedicated so if they want to reduce your dose they need to do those tests to support the reduction.

See thyroiduk.org.uk/tuk/about_... > Treatment Options:

"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)."

Dr Toft is past president of the British Thyroid Association and leading endocrinologist. You can obtain a copy of the article by emailing Dionne at tukadmin@thyroiduk.org print and highlight question 6 to show your doctor.

Also, if all those results were from you taking the same dose, and blood drawn at the same time of day under the same conditions (did you eat, did you take your Levo beforehand) then thyroid antibodies should be tested - both TPO and TG - as autoimmune thyroiditis aka Hashimoto's could be indicated.

ETA - oops, sorry, just seen that SlowDragon has said the same :)

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The only people who can advise about the dose of thyroid hormones is the person who is taking it. A nurse cannot possibly know anything about what we suffer when we don't have an optimum and a TSH cannot possible do so.

What happened before blood tests were invented - doctors used their knowledge about clinical symptoms and blood test - patients were given NDT until they were symptom free and I doubt they dropped dead through too much as it was used safely for 100 years it is taken by many people today. If we have too much we also get bad symptoms and would reduce, just as we'd increase.

Ask the nurse what TSH stands for. She probably may not know it is thyroid stimulating hormone and in normal health it would be low or very low. It is only when thyroid gland is struggling that the TSH goes into action to try to flag up thyroid hormones. She is probably afraid of losing her job if you develop a problem so is safeguarding her job but doesn't care if you are unable to work.

This is an extract:

"The Myth that it is possible to set a precise dose of thyroid medication"

thyroiduk.org.uk/tuk/thyroi...

There appears to be a school of thought that the treatment of hypothyroidism can these days be carried out with great precision.

This is presumably based on the assumptions that, for instance:

you can measure the levels of thyroid hormones in the blood very accurately

the potency of each tablet never varies

you can find a combination of tablet strengths that make up the precise dose your doctor thinks you need without you having to sub-divide any tablets for yourself

your thyroid hormone needs never change.

Thyroid Hormone Measurements

No measurement can ever be made which does not have some degree of uncertainty or imprecision. As the concentrations of thyroid hormone in the bloodstream are extremely small, the measurement of them is actually quite difficult. Furthermore, there are several different measurement techniques in use, each having its own reference range. Even two labs in the same city may be using different ones (so it is very important to always ask for a print out of your test results which should give the applicable reference ranges).

TSH blood test measurements made by all the pathology labs throughout the UK are periodically checked using a standard TSH solution supplied by the regulatory authority, as is required by law. Apparently, if all the standard TSH solution results from the all the different pathology labs in the UK were to be compared they would be seen to vary by up to one quarter of the reference range in either direction!

There is no such legal requirement to standardise the FT3 and FT4 blood test measurements, and because of the poorer standards of production by different manufacturers, variation of the measurement can be even greater.

Furthermore, the levels of TSH and FT3 in your bloodstream follow a 24 hour diurnal cycle and, to complicate matters further, the hormones are not secreted continuously, rather as several ‘spurts’ a day, so ignoring the time of day your blood sample was taken could introduce further errors.

In summary, the TSH blood test is cheaper but relates poorly to the hormone levels in your cells. The FT3 and FT4 blood tests yield better information but are more expensive to do as well as being less accurate.

thyroiduk.org.uk/tuk/thyroi...

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Hi Seaside Susie

All the results from March 2017 were with a 25mcg increase until October 2016 where an increase of 12.5mcg happened.

All tests are first thing in the morning. Fasting and no Thyroxine until after the test.

I am really getting fed up of them treating the blood test - no one asks me how I feel! I really cannot go back to feeling like phoo with my hair falling out and just no get up and go at all - I am sick of feeling ill and being fat!

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As conditions were the same each time, if you were on the same dose of Levo when these tests were done

Serum TSH level 0.48 mU/L (0.27 - 4.2mU/L) 09-Feb-18

Serum TSH level 3.8 mU/L (0.55 - 4.8mU/L) 26-Jul-17

then even though the range is slightly different the actual difference in TSH is far too much and I would bet you have Hashi's. But you also need FT4 and FT3 testing.

You need TPO and TG antibodies testing. The NHS may do TPO but you may not get TG antibodies tested, an endo does those. You can do a fingerprick test with Medichecks or Blue Horizon for the antibodies.

"I am really getting fed up of them treating the blood test - no one asks me how I feel!"

A lot of us get the same. My GP goes on about my suppressed TSH, and I had a bit of a do with the nurse practitioner recently who was questioning whether I needed to be on Levo. I told him that as I'd been on it for over 40 years then I'm sure something would have been said before. When he said it would be an interesting conversation to have with an endo I told him I'd done that 20 years ago and got the t-shirt, the endo was a pig, he reduced my Levo until my TSH came back into range but by doing so my FT4 and FT3 plummeted to bottom of range, I was so ill but he didn't care because my TSH was in range (YIPEE!). I said I had to give up working in my own business and be looked after for 2 years, and I would not be going down that road again. He changed the subject then!

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Hi Shaws - That's given me a bit more ammunition to use at them. One of the problems is both the nurses are new and have no idea who I am or what I feel like. I will get a telephone consultation but will do my best to fight them off.

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Well! Not heard a dicky bird from them! I was rung on the appointment day by one of the secretaries to say the nurse was ill so I would not be contacted by her. I asked why they want to reduce my thyroxine and was told that it had dropped since the last dose. I questioned this with 'Isn't that what it is supposed to do?' She did say that the duty Doc will ring me but no one did.

I am leaving well alone and not pushing them to contact me. I know they will be on to me soon but for now I am enjoying feeling well - or I will once I get rid of this sore throat and snotty nose!

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What a strange Diabetic annual review I had yesterday - seems the diabetic nurse is also the Thyroid nurse I was having a chunter about feeling well and getting about better and not wanting my Thyroxine reduced when she informed me that she was the Thyroid nurse!!

Well there was little to discuss on the diabetic side so we continued to discuss my thyroid treatment. She informed me that my TSH was below the minimum level! I said 'No it isn't!' The minimum on the range is .27 to which she said yes but we like it to be above .5! What is the point of having a minimum if you are just going to make up your own!

We discussed what type of Hypo I had and how no one would have a clue as all I had tested was TSH! She said that the initial diagnosis would have had all the tests - I told her to look at the results and she would see that I was diagnosed on TSH only. 'Oh yeah' she said.

Anyways - after bombarding her with FT2 FT4 mutterings she has relented and I will stay on the dose I am on for the next 12 months - will test again next March!

Thanks again for all your help - even though I was not ready for my battle I seem to have retained enough info to win this round.

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