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Thyroid UK
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Hi new here

Hi I was diagnosed hypothyroid 2010 with a TSH of 38.5 (0.2 – 4.2) FT4 10.1 (12 – 22) and started on levothyroxine. I also have antibodies to thyroid peroxidase 78.3 (<34) and thyroglobulin 886.5 (<115) after many dose changes my TSH in November was 4.9 (0.2 – 4.2) FT4 14.6 (12 – 22) FT3 3.5 (3.1 – 6.8)

I am getting more infections, have tiredness, dry skin, unable to open bowels for days, losing hair and eyebrows, low concentration. Your thoughts please.

Thanks

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If correctly treated your TSH should be 1.0 or below

And your freet4 and free t3 should both be in balance near top of their ranges

You are vlearly very seriously undertreated

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Hi well I am not sure what dose I need to be on? Thanks

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Have you never had your dose changed Kym5? Your doctor needs to do bloods to find out what dose is good for you. So not sure whether he has ever done this but it's still relevant anyway. When starting on medication we are retested after 6-8 weeks. It takes about 6 weeks to get each dose change fully into our bodies so retest after the 6 weeks and then more medication if needed i.e. If levels still too low. Increases should be done in 25 mcg and then we are retested again after 6 weeks to see if we are on the correct dose for us. So this is repeated till our blood results show that is the right level for us which is usually TSH around 1 with FT4 and FT3 in the top third or even in the top quarter of their respective ranges.

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Welcome to the forum, Kym5.

You are undermedicated to have TSH 4.9 while taking Levothyroxine and FT4 and FT3 are low in range. You should ask your GP to increase dose.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.2 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your GP.

Thyroid peroxidase and thyroglobulin antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

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

healthunlocked.com/thyroidu...

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When on Synthroid (T4 only), I gained weight, retained water terribly, and just felt awful....worse than no thyroid med at all!! Switching to a T3/T4 combination changed everything for the better!!

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Hi well I am not sure what dose I need to be on? Thanks

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It does not work like that ...you need to be tested every 4 weeks and your dosage raised to get a TSH of 1.0 or below

Freet4 and free t3 both in balance and near top of their ranges

But above all dosage has to be adjusted until you loose your hypothyroid symptoms

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Hi thanks I was started on 25mcg in 2010, then 50mcg, 75mcg, 100mcg, 125mcg, 150mcg, levothyroxine was then stopped. Then restarted 25mcg, increased to 50mcg, 100mcg, 125mcg, 150mcg, 175mcg. Then levothyroxine stopped and restarted 25mcg, 50mcg, 75mcg, 100mcg, 125mcg, 150mcg and then reduced to 25mcg which is what I have been on since November 2017

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How long between stop and restart? This really is not good enough. You are being treated like a guineapig. your doctors are saying "Let's see what happens if we do this". "Or that. Pls tell whoever is up to this nonsense that your body is desperately trying to make sense of the huge fluctuations that you are being subjected to. It doesn't instantly respond to a change, but the next change has started before you have got used to the first one. No wonder nothing useful comes out of a strategy like this. Slow, gentle and careful monitoring of what each change entails before starting the next is the way to go.

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Hi between each stop and restart was 8 weeks

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That is simply not on. Say you are on a dose of T4. After week one you have about half the T4 that you had a week ago if you take no more. Weeks 2 down to 25%, week 3 12.5% week 4 6%, week five 3%, week six 1.5%, week seven 0.75%, week eight 0.37% of what you will need. If you have no thyroid or very little working, then you are on a huge rollercoaster from enough to nothing. Your body cannot cope with this - it is barbarous.

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Hi thanks GP said I would benefit from T3

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So get referral to T3 friendly endo

Email Thyroid UK for list

Professor Toft recent article saying, T3 may be necessary for many

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

But with Hashimoto's we need gluten free diet and optimal vitamins are required first

Need to get started back on 50mcg Levothyroxine, retest after 6-8 weeks, dose increased in 25mcg steps (retesting 6-8 weeks after each dose increase) until TSH is around one and FT4 towards top of range

If FT3 remains low then next step is to consider adding small dose of T3

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Yes FT3 has always been low

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but you are not gluten free yet and vitamins very far from optimal.

Getting back on 50mcg levo, improving vitamins and strictly gluten free diet will all help (but get coeliac blood test first)

We cant just take T3 when vitamins are too low. Need Levo first, increased in slow steps (retesting 6-8 weeks after each 25mcg increase in Levo) until TSH is around one and FT4 towards top of range.

Always same brand of levo on empty stomach and nothing apart from water for an hour after

Vitamin D and Iron at least four hours away from levo

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I am really not sure what dose I need to be on? I have been getting a fever and sweat attacks due to a virus and I am worried by doing anything to my dose I will end up overmedicated?

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I think we're going to need a bit more detail in order to be able to help you. :)

What dose were you started on? What dose are you on now? How long have you been on it?

The protocol is to start on 50 mcg, retest in six weeks, and increase by 25 mcg; and continue that way until all your symptoms are gone. Is that what happened? If not, then you may have a rather ignorant GP. Obviously, you are still under-medicated to have a TSH of 4.9, and your doctor should have increased your dose by 25 mcg in November. Did he do that?

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Hi thanks I was started on 25mcg in 2010, then 50mcg, 75mcg, 100mcg, 125mcg, 150mcg, levothyroxine was then stopped. Then restarted 25mcg, increased to 50mcg, 100mcg, 125mcg, 150mcg, 175mcg. Then levothyroxine stopped and restarted 25mcg, 50mcg, 75mcg, 100mcg, 125mcg, 150mcg and then reduced to 25mcg which is what I have been on since November 2017

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Your doctor is raving mad!!! Why on earth does he do that? No wonder you're not getting any better!

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Hi thanks do I go back to the dose I felt almost well on which was 150mcg or start back on 25mcg?

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Sorry forgot to say that the GP and endo have been reducing/restarting/stopping/increasing due to blood results

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You mean TSH results? Then they're still idiots and know nothing about thyroid. Do you have copies of all those results?

Nothing, but nothing, justifies stopping completely, once you've been diagnosed - and with Hashi's to boot! - and starting again from the beginning. That is sheer madness, and guaranteed to keep the patient sick. I suppose they have no idea how Hashi's works. Do you?

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I can post all results from diagnosis until now. I don't understand how Hashis works

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So, what happens with Hashi's is that the immune system attacks the thyroid, mistaking it for the enemy (I'm simplifying because it's complicated) and the dying cells release their stock of hormone into the blood, causing levels of FT4 and FT3 to rise sharply, which causes the TSH to drop.

But, that rise is only temporary. It's a good idea to maybe stop the levo if you feel a bit hyper, but not to change the prescription, because, eventually, those numbers are going to change. When all the excess hormone is used up or excreted, the Frees are going to go down again, and the TSH will rise again. And, that's why you are not stabilised - that plus the fact that idiot endo is dosing by TSH and you are a poor converter.

So, in order to even out these highs and lows, and reduce the immune system attacks on the gland, you need to keep your TSH suppressed. When the TSH tries to stimulate the thyroid, that also stimulates the immune system to attack. A suppressed TSH does not automatically mean you are over-medicated if the FT3 is still in-range.

Your endo should know all that, but he obviously doesn't. So, tell him to go back to med school, or do some research. It's all there for everybody to read, on-line.

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TSH in September 2017 on 150mcg was 0.03 (0.2 - 4.2) FT4 25.6 (12 - 22) FT3 4.6 (3.1 - 6.8) then dose reduced. Endo says he doesn't understand why my condition isn't stabilising

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Lord, he's worse than I thought! Stupid man! He really does know nothing about thyroid! He is dosing by the TSH, and the TSH is totally irrelevant once you are on thyroid hormone replacement (T4/levo).

In those results, your TSH was suppress - which is what it ought to be when you have Hashi's. Your FT4 was over-range, but that's not surprising because you're a poor converter, and instead of converting to T3, your T4 is just mounting up and converting to more rT3 than T3. Your FT3 is too low, and that's the number he should be looking at if you know anything about thyroid.

He was right to reduce your levo, but he should have added in a little T3 to it. Then you would have stabilised. I despair, I honestly do!

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Endo did not raise dose.

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At the moment I take nothing?

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Why?

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Hi thanks. Really it is because of the virus I have. I have been getting very feverish and I am worried I will overdose if I take more or restart my meds

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No, I really don't think that's a possibility. In fact, when one is ill, one tends to become slightly more hypo. You really need that levo.

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Sweats and tremors are often due to under medication and low vitamins

How much Levothyroxine are you taking

Ask GP to test vitamin D, folate, ferritin and B12

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

About 90% of all primary 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 can 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

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 gut connection 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 and to test vitamins

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...

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

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

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

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Hi thanks I was taking 25mcg before that. I supplement Vit D, B12, folate and iron deficient

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Get vitamins retested ASAP plus thyroid.

Suspect vitamins are all too low.

Ask for coeliac blood test, before changing to strictly gluten free diet

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Hi thanks I have results of vitamins and minerals from December 2017?

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Can you add them or perhaps start a new post

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Confirmed iron deficient 2013, not taking iron. Confirmed folate deficient 2016, taking 5mg folic acid once a week. Confirmed vitamin D deficient 2013, taking 800iu D3. Confirmed low B12, receiving B12 inejctions since September 2017.

Ferritin 38 (30 - 400)

Folate 2.0 (2.5 - 19.5)

Vitamin D total 59.3 (50 - 75 suboptimal. Advise on safe sun exposure and diet)

Vitamin B12 504.3 (190 - 900)

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Detailed supplements advice on Low vitamins due to under medication

healthunlocked.com/thyroidu...

Folic acid supplements should be increased to daily.

Look at adding a good vitamin B complex with folate in

If you start or are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Ferritin is much too low. Insist on full iron panel and ferrous fumerate supplements should be prescribed

Vitamin D - dose is inadequate. Many with Hashimoto's find Better You vitamin D mouth spray is good as avoids poor gut function. Perhaps try 3000iu. May need more. Likely to need ongoing maintenance dose once reach improved levels. Retest twice yearly via

Vitamindtest.org.uk £28 postal kit

Persistent low vitamins with supplements suggests coeliac disease or gluten intolerance

gluten.org/resources/health...

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Hi thanks complete blood count only showed MCV 80.6 (83 - 98) MCHC 368 (310 - 350) iron was 7.2 (6.0 - 26.0) transferrin saturation 12 (12 - 45)

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Will flag SeasideSusie and humanbean to comment on that.

I don't know much about iron

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Confirmed iron deficient 2013 not taking iron

MCV 80.6 (83 - 98) MCHC 368 (310 - 350) iron was 7.2 (6.0 - 26.0) transferrin saturation 12 (12 - 45)

Your low MCV and high MCHC support the iron deficiency anaemia diagnosis. Why aren't you taking iron? This is the 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.

You should ask your doctor for appropriate treatment.

Ferritin 38 (30 - 400)

You can help raise ferritin 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...

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Hi thanks not taking iron because my prescription for it hasn't been renewed

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How long since your prescription ceased? Why wasn't it renewed? Were you under a haemotologist for the iron deficiency anaemia and if so are you still seeing him or have you been discharged?

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It was stopped in June 2017, was under haematology and discharged in May 2017. GP has said ferritin in range no action required.

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December 2017

Ferritin 38 (30 - 400)

Were these also from December 2017 -

MCV 80.6 (83 - 98) MCHC 368 (310 - 350) iron was 7.2 (6.0 - 26.0) transferrin saturation 12 (12 - 45)

If so then you are still iron deficient and need treatment.

When you were discharged from haematology in May 2017 what were your results? Did the haematologist say you should be referred back if Ferritin went below 50 (some do).

Although your Ferritin is in range, and that is all your GP cares about, it has to be at least 70 for thyroid hormone to work so it may mean that you have to sort that out yourself but you have to ask your GP to do something about the iron deficiency if those MCV and MCHC results are recent.

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Yes those are my current results and when I was discharged from haematology my ferritin was 110.3 (15 - 150 and my MCV was below range 78.3 (80 - 98) MCHC above range 376 (310 - 360)

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So your current MCV and MCHC levels show iron deficiency anaemia, as they did when you were discharged by your haematologist. You really need to point this out to your GP and ask what he intends to do about it.

And did your haematoligist not say anything about if your Ferritin fell below a certain level again?

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He said if it falls below 50 to be re-referred back to him. GP has insisted ferritin is in range. I don't understand why she is ignoring a specialist!

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Then you should contact the specialist and tell him that your GP is ignoring his instructions. Whatever contact details you have, telephone, email, get your message across to the specialist (maybe via his secretary) and ask either that the specialist contacts your GP with explicit instructions for your treatment or gives you an urgent appointment at his clinic . Don't let this continue, this is your health and your GP is being negligent by ignoring the haematologist.

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Also had sweating and weight loss with TSH 6.8 (0.2 - 4.2) FT4 12.8 (12 - 22) FT3 4.0 (3.1 - 6.8) in Feb 2016?

Results before that in December 2015 on 100mcg levothyroxine and 10mcg T3

TSH 0.07 (0.2 - 4.2)

FT4 22.1 (12 - 22)

FT3 4.2 (3.1 - 6.8)

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Your doctor has zero clue and is killing you ...on no account ever ever accept dose reduction like that ...150mcg or 175mcg is likely to be correct by look of things

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