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Thyroid UK
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Symptoms not thyroid

New member I've been told by endo my symptoms are not thyroid related. Taking 150mcg levo and have symptoms of joint pain, recurring infections, constipation, heavy periods, dry skin, tiredness, sore and puffy eyes, anxiety and depression. Diagnosed 6 years ago thanks

TSH 6.2 (0.2 - 4.2)

Free T4 13.9 (12 - 22)

Free T3 3.5 (3.1 - 6.8)

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I'm sure someone with a lot more knowledge than me will come along soon, but in the mean time..

You need an increased dose of levo.. Your THS should be 1 or below.

Your FT3 should be in the upper range

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Thanks I hope others will respond because my symptoms are really affecting my day to day functioning especially at work :(

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Danim My guess - endo is a diabetes speciaist (who doesn't know much about thyroid or how to treat it).

So, indulge me (I'm feeling a bit naughty) what did endo say about your over range TSH?

Maybe some further information -

Have you had dose changes - if so why, what were the results that prompted the change?

Have you had antibodies tested - were they high - Hashimoto's?

Have you had vitamins and minerals tested - supplementing anything? Results and dose of supplements?

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Endo said I should be taking 150mcg levothyroxine

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Endo's a jerk. You have an over range TSH and he's keeping you on 150mcg instead of increasing it?

The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo - see thyroiduk.org.uk/tuk/about_... > Treatment Options

According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.

The booklet is written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It's published by the British Medical Association for patients. Avalable on Amazon and from pharmacies for £4.95 and might be worth buying to highlight the appropriate part and show your doctor. However, I don't know if this is in the current edition as it has been reprinted a few times.

Also -

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)."

You can obtain a copy of the article by emailing louise.roberts@thyroiduk.org print it and highlight question 6 to show your doctor.

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Other results (all done fasting/early morning/leaving off levo for 24 hours/T3 for 12 hours)

Jan 2017 (200mcg levo and 10mcg T3)

TSH 0.08 (0.2 - 4.2)

Free T4 22.8 (12 - 22)

Free T3 4.8 (3.1 - 6.8)

Nov 2016 (175mcg levo and 10mcg T3)

TSH 3.84 (0.2 - 4.2)

Free T4 17.2 (12 - 22)

Free T3 5.0 (3.1 - 6.8)

Jul 2016 (150mcg levo and 10mcg T3)

TSH 4.01 (0.2 - 4.2)

Free T4 18.3 (12 - 22)

Free T3 4.6 (3.1 - 6.8)

Feb 2016 (150mcg levo and 10mcg T3)

TSH 7.05 (0.2 - 4.2)

Free T4 12.9 (12 - 22)

Free T3 4.2 (3.1 - 6.8)

Dec 2015 (100mcg levo and 10mcg T3)

TSH <0..02 (0. 2 - 4.2)

Free T4 20.6 (12 - 22)

Free T3 5.8 (3.1 - 6.8)

Oct 2015 (100mcg levo and 10mcg T3)

TSH <0.02 (0.2 - 4.2)

Free T4 20.3 (12 - 22)

Free T3 5.2 (3.1 - 6.8)

Aug 2015 (175mcg levo)

TSH 1.20 (0.2 - 4.2)

Free T4 19.8 (12 - 22)

Free T3 3.9 (3.1 - 6.8)

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Damin

Taking these two sets of results

Nov 2016 (175mcg levo and 10mcg T3) TSH 3.84 (0.2 - 4.2) Free T4 17.2 (12 - 22) Free T3 5.0 (3.1 - 6.8)

Jan 2017 (200mcg levo and 10mcg T3)

TSH 0.08 (0.2 - 4.2)

Free T4 22.8 (12 - 22)

Free T3 4.8 (3.1 - 6.8)

I can see why your endo increased your Levo to 200mcg with 10mcg T3 after the November results, but did he reduce you to just 150mcg Levo and remove your T3 after the January results?

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Yes

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Danim

OK, so taking these results

Jan 2017 (200mcg levo and 10mcg T3)

TSH 0.08 (0.2 - 4.2)

Free T4 22.8 (12 - 22)

Free T3 4.8 (3.1 - 6.8)

There was no need to remove your T3 at all, your FT3 was still in range, in fact quite low in range. Your Levo could have been reduced by just 25mcg to get your FT4 back into range and your T3 increased to bring it up in range.

The fact that your TSH is suppressed doesn't matter, taking T3 will do that and your endo should know that fact if he is prescribing T3.

So you had your thyroid meds reduced by 50mcg Levo plus 10mcg T3, which altogether is the equivalent of 80mcg Levo reduction (T3 being 3 x equivalent of Levo), which is quite drastic. Thyroid hormones should be adjusted gradually. Now you have 150mcg Levo only with these results

TSH 6.2 (0.2 - 4.2)

Free T4 13.9 (12 - 22)

Free T3 3.5 (3.1 - 6.8)

and they show you are undermedicated and need an increase. You have to get your TSH back down to the low end of the range and as you have Hashi's the very best place is suppressed in order to reduce antibody activity. You need 25mcg Levo increase now to get your FT4 up then you need your T3 reintroduced.

You have to address the Hashi's. Hashi's causes gut/absorption problems and this can trash nutrient levels, which it has done in your case. You need your nutrients optimising so that thyroid hormone can work, but your nutrients wont improve until the gut/absorption problem has been addressed.

I doubt whether your endo or GP knows any of this.

See SlowDragon's reply to this post on how to address gut/absorption problems healthunlocked.com/thyroidu...

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Will have to get other thyroid results

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TPO antibody 476 (<34)

TG antibody >1000 (<115)

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Danim

TPO antibody 476 (<34)

TG antibody >1000 (<115)

Has anyone bothered to tell you that you have autoimmune thyroid disease aka Hashimoto's as confirmed by your high antibodies? This is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test result and if you've had dose changes based on results it will be because of the antibody attacks and your endo not understanding what Hashi's does or how to treat it.

Read and learn about Hashi's, educate yourself so you can help yourself, because your doctors wont. Most doctors attach no importance to Hashi's or how it affects the patient.

You 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. You don'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 very often nutrient deficiencies or low levels are the result. If you post your vitamin and mineral results (say if supplementing and with what) we can see if you have a problem there, my guess is that you have and this is what is causing some of your symptoms. Nutrient levels need to be optimal for thyroid hormone to work.

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Ferritin 44 (30 - 400)

Folate 2.2 (2.5 - 19.5)

Vitamin B12 218 (190 - 900)

Vitamin D total 20.1

(<25 severe vitamin D deficiency

25 - 50 deficiency

50 - 75 suboptimal

>75 adequate)

No supplements and iron stopped in May 2016 due to iron infusion

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Danim

Ferritin 44 (30 - 400)

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. Were you under a haematologist? Some ask for patient to be referred back to them for another infusion when ferritin goes below 50.

Did you have iron deficiency anaemia? If so is that still being monitored?

You definitely need something done about your ferritin level.

You can help raise your 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 your diet apjcn.nhri.org.tw/server/in...

**

Folate 2.2 (2.5 - 19.5)

Vitamin B12 218 (190 - 900)

Folate deficiency and low B12. Do you have any signs of B12 deficiency b12deficiency.info/signs-an...

Please go and post on the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc/po...

Quote your Folate, B12 and ferritin result, any information about iron deficiency if you were ever diagnosed and have any recent results, also quote any signs of B12 deficiency you might be experiencing.

You may need testing for Pernicious Anaemia, you may need B12 injections, you will need folic acid for the folate deficiency. Don't start folic acid until any further investigations have been carried out, and B12 should be started before folic acid.

I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:

"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."

And an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

**

Vitamin D total 20.1

You have severe Vit D deficiency and need loading doses of D3 - see NICE treatment summary for Vit D deficiency:

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

"Treat for Vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 nmol/L.

For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU] given either as weekly or daily split doses, followed by lifelong maintenace treatment of about 800 IU a day. Higher doses of up to 2000IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders. Several treatment regims are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."

Each Health Authority has their own guidelines but they will be very similar. Go and see your GP and ask that he treats you according to the guidelines and prescribes the loading doses. Once these have been completed you will need a reduced amount (more than 800iu so post your new result as the time for members to suggest a dose) to bring your level up to what's recommended by the Vit D Council - which is 100-150nmol/L - and then you'll need a maintenance dose which may be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/

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.

When you come to buy your own D3 as a maintenance dose, as you are Hashi's you will be better off buying an oral spray for better absorption, eg BetterYou. They do a D3 alone or D3/MK7 version.

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I have iron deficiency but it's no longer being monitored thanks

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So if it's not being monitored - two questions

How do you know if you still have iron deficiency? Is your GP testing rather than a haematologist?

Why isn't your doctor treating it?

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GP still testing

Below range MCV

Above range MCHC

GP is just not treating it

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Well, what are you going to do about that?

See the guidelines for treating iron deficiency anaemia here NICE Clinical Knowledge Summary for iron deficiency anaemia treatment (which will be very similar to your local area guidelines):

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

How should I treat iron deficiency anaemia?

•Address underlying causes as necessary (for example treat menorrhagia or stop nonsteroidal anti-inflammatory drugs, if possible).

Treat with oral ferrous sulphate 200 mg tablets two or three times a day.

◦If ferrous sulphate is not tolerated, consider oral ferrous fumarate tablets or ferrous gluconate tablets.

◦Do not wait for investigations to be carried out before prescribing iron supplements.

•If dietary deficiency of iron is thought to be a contributory cause of iron deficiency anaemia, advise the person to maintain an adequate balanced intake of iron-rich foods (for example dark green vegetables, iron-fortified bread, meat, apricots, prunes, and raisins) and consider referral to a dietitian.

• Monitor the person to ensure that there is an adequate response to iron treatment.

There is a lot for you to sort out besides your iron anaemia - your Vit D, your B12/folate and your ferritin - all these need to be discussed with your GP so make an appointment and don't come away unless you've got a treatment plan. See a different GP if necessary, even change surgeries if necessary.

Then you have the Hashi's and the gut/absorption problems you will have to address yourself, unless of course your GP is willing to do any tests for poor absorption.

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Thanks I asked GP what he intends to do and he said he couldn't be bothered

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I asked GP what he intends to do and he said he couldn't be bothered

Really??!!!!!

Well I think you have a genuine case for making a formal complaint for negligence.

See another GP, get the ball rolling on appropriate treatment (post on the PA forum for guidance on your B12/folate results), then put in a complaint. Unless you and your GP have some kind of personality clash or problem which makes him treat you like that then if he 'can't be bothered' he is in the wrong job.

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WOW !!!! SeasideSusie So well explained . THANK YOU .

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Hi Danim

What does endo think your symptoms ARE related to? The mind boggles lol!

Hopefully kind people on forum will advise ~ you're in the right place don't worry. Mamapea x

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So if they are not thyroid-related when your bloods show that you are not on enough medication, and the symptoms are classic hypo symptoms, what are they? I really don't think many of these doctors paid any attention at uni. Can you see another doctor with more of a clue?

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