High tsh advice please

[JCJ2]

Hi new member diagnosed hypothyroid 4 years ago and taking 50mcg levo due to adrenal problems shall I ask GP to increase thankyou

Tsh 7.1 (0.2 - 4.2)

Free T4 11.8 (12 - 22)

Free T3 3.2 (3.1 - 6.8)

[SeasideSusie Remembering]

shall I ask GP to increase

Yes. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges, so you are grossly undermedicated.

taking 50mcg levo due to adrenal problems

You need the levo for your hypothyroidism. Who said you had adrenal problems? Have you had a saliva cortisol test? Adrenals are supported with supplements, which supplements depends on whether you have high or low cortisol and high or low DHEA.

Have you had thyroid antibodies tested?

Have you always been on 50mcg Levo since diagnosis or has dose changed, if so what prompted the changes?

[JCJ2 in reply to SeasideSusie]

Thankyou for reply I have low saliva cortisol and Genova asked me to have my levels retested in 3 months time. I have thyroid peroxidase antibodies of 279.5 (<34) and thyroglobulin antibodies of 366.3 (<115)

I have been on more than 50mcg and the dose change was prompted by endo since he did not like suppressed tsh and I also felt more unwell the more my dose was raised

[SeasideSusie Remembering in reply to JCJ2]

JCJ2 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 results. Unfortunately, not many doctors think antibodies matter, but of course they do to you because the fact that they fluctuate can cause you to swing from hypo to hyper and back to hypo.

I think that because your endo changed your dose due to suppressed TSH means that he is probably a diabetes specialist (most endos are) and doesn't know very much about thyroid/autoimmune thyroiditis (their name for Hashimoto's) and how to treat it.

From 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 is available from pharmacies and Amazon for about £4.95. You could get a copy, highlight the relevant part and show your endo.

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 [e-mail] print it off and highlight question 6 to again show your endo.

Hopefully that will then mean that he will stop dosing by TSH alone and look at FT4 and FT3 instead.

Dose changes can be necessary when there are 'Hashi's swings' from hypo to hyper, then the dose should be adjusted again when the swing goes the other way, which it inevitably will because these fluctuations are temporary.

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.

Again, this is something many doctors attach little importance too, purely because they don't know and wont admit it.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

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

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Dr Myhill has information about adrenal stress test results which is worth checking out (her whole site is a good source of information) drmyhill.co.uk/wiki/Adrenal...

**

So what you should do now is make an appointment with your GP and ask for an increase of 25mcg. Retest in 6 weeks when you might find you need another increase of 25mcg, keep repeating retesting/increases until you feel well and symptoms abate. If your GP doesn't agree, then you have the information from Dr Toft to support you.

When booking a thyroid test, always book the first appointment of the morning, fast overnight (water allowed) and leave off Levo for 24 hours. This gives the highest possible TSH which is needed when looking for an increase or two avoid a reduction in dose.

[JCJ2 in reply to SeasideSusie]

Thankyou all bloods done fasting early morning and leaving off levothyroxine for 24 hours

[SlowDragon Administrator]

Hashimoto's very often affects the gut, leading to low stomach acid, low vitamin levels and leaky gut.

Low vitamins that affect thyroid are vitamin D, folate, ferritin and B12. Important to test these. If they are too low they stop Thyroid hormones working.

Have these been tested, if not ask that they are. Always get actual results and ranges.

If they have post results here

As you have Hashimoto's then hidden food intolerances may be causing issues, most common by far is gluten. Changing to a strictly gluten free diet may help reduce symptoms and eventually start to lower antibodies. Very very many of us here find it really helps and can slowly lower antibodies, improving symptoms

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

Probiotics

carolinasthyroidinstitute.c...

Can you post results from when you were on higher dose. Were your vitamins ever tested then?

[JCJ2 in reply to SlowDragon]

Thankyou I have results below of higher doses

Nov 2013 (100mcg levo)

TSH 4.3 (0.2 - 4.2)

Free T4 15.3 (12 - 22)

Free T3 4.2 (3.1 - 6.8)

Jan 2014 (125mcg levo)

TSH 4.6 (0.2 - 4.2)

Free T4 15.6 (12 - 22)

Free T3 4.0 (3.1 - 6.8)

May 2015 (150mcg levo)

TSH 6.01 (0.2 - 4.2)

Free T4 25.3 (12 - 22)

Free T3 5.2 (3.1 - 6.8)

Thyroid peroxidase antibody 58.5 (<34)

Thyroglobulin antibody 255.3 (<115)

Aug 2015 (175mcg levo)

TSH 1.49 (0.2 - 4.2)

Free T4 19.3 (12 - 22)

Free T3 4.1 (3.1 - 6.8)

Nov 2015 (75mcg levo and 10mcg T3)

TSH <0.02 (0.2 - 4.2)

Free T4 20.6 (12 - 22)

Free T3 5.6 (3.1 - 6.8)

Dec 2015 (75mcg 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)

I had vitamins and minerals tested in January this year

Ferritin 32 (30 - 400)

Folate 1.9 (2.5 - 19.5)

Vitamin D 30.6 (25 - 50)

Vitamin B12 197 (190 - 900)

Supplementing ferrous fumarate for 3 years and vitamin D 800iu for 4 years

[SlowDragon Administrator in reply to JCJ2]

Yes well you only improved when taking T3.

Your vitamin levels are dire.

SeasideSusie is the supplements expert - no doubt she will reply on what you need to take

You almost certainly need to change to strictly gluten free diet to help gut heal. Plus significant supplements to improve vitamins

Highly likely you need to start back on T3 too once these vitamins are improved and gluten free diet is lowering antibodies

Read up as much as possible about Hashimoto's (medics are clueless)

You might want to consider DIO2 gene test too.

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

[SeasideSusie Remembering in reply to JCJ2]

JCJ2

Ferritin 32 (30 - 400) - Supplementing ferrous fumarate for 3 years

Blimey! It's not done much good then has it! Ask your GP why, after 3 years supplementing with ferrous fumarate, is your ferritin still only 2 points up from the bottom of the range?

Have you had an iron panel and full blood count done to see if you have iron deficiency anaemia? If not you need them done so ask your GP.

How much ferrous fumarate are you taking?

If taking iron tablets then take each one with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption.

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...

For thyroid hormone to work ferritin needs to be at least 70, preferably half way through range.

**

Folate 1.9 (2.5 - 19.5)

Vitamin B12 197 (190 - 900)

You are folate deficienc with very low B12. Do you have any signs of B12 deficiency b12deficiency.info/signs-an...

Please go to the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc/posts

You most likely need to be tested for Pernicious Anaemia, you may need B12 injections, you certainly need your folate supplementing. Do not supplement anything for folate or B12 until you've taken advice from the PA forum and any further testing has been carried out.

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 30.6 (25 - 50) - Vitamin D 800iu for 4 years

Another question for your GP - why, after 4 years of taking Vit D, is my level still at the bottom end of the Deficiency category?

800iu D3 isn't going to ever raise your level. It is hardly a maintenance dose for someone with a reasonable level.

Show this to your GP:

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 maintenance treatment of about 800 IU a day. Higher doses of up to 2000 IU 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 regimens 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. Then ask your GP for the loading doses as you are just 0.6 away from the deficiency level according to this treatment summary. Once the loading doses have been completed you will need a reduced amount (not the paltry 800iu prescribed) 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/

If you wish (and it might be a better idea) you can do it yourself with guidance from members. I got my Vit D level up from 15 to 200 in two and a half months by buying my own softgels, taking a loading dose then a maintenance dose. I now maintain at around 150nmol/L. The recommended level is 100-150nmol/L. D3 has important cofactors that are needed, read about them here vitamindcouncil.org/about-v...