Sick and tired of being sick and tired! :( - Thyroid UK

Thyroid UK
109,860 members127,660 posts

Sick and tired of being sick and tired! :(

Hensam
Hensam

Hi I am new to forum, and I am positively amazed at the responses I have read to the posts I have read.

I was diagnosed with hypothyroidism in 2012 and never felt well on Levo. I felt better on Levo and T3 combined but this was stopped by my endo who says he doesn't support NDT, T3 or Armour, only Levo. He has said relief of symptoms does not equal evidence T3 worked for me. I want to go back to taking T3 but worry about facing a telling off from the endo.

My symptoms are mainly pains in joints, dry skin, dry eyes, hair loss, dizziness, memory loss, hair on face and body (confirmed as having polycystic ovarian syndrome - but this is untreated), internal shaking, slower moving bowels, weight gain, goitre becoming more noticeable (ultrasound in 2016 confirmed goitre), pins and needles, feeling colder, tired, heavier periods. Any advice welcome, recently had a dose change from 150mcg Levo to 100mcg Levo because GP did not like below range TSH.

Thanks for reading/advice.

Sept 2017

TSH 0.02 (0.2 - 4.2)

FREE T4 21.4 (12 - 22)

FREE T3 4.5 (3.1 - 6.8)

TPO ANTIBODY 377.3 (<34)

TG ANTIBODY 404.5 (<115)

Oct 2017

TSH 6.30 (0.2 - 4.2)

FREE T4 13.7 (12 - 22)

FREE T3 4.0 (3.1 - 6.8)

9 Replies
oldestnewest

I felt better on Levo and T3 combined but this was stopped by my endo who says he doesn't support NDT, T3 or Armour, only Levo. He has said relief of symptoms does not equal evidence T3 worked for me...

Your endo is one of a large number of sadistic barstewards masquerading as medics. Ask LouiseRoberts for the list of more sympathetic endos and you may get somewhere, although there's no guarantee. If not there is the opportunity to self medicate at your own cost. You can't allow this evil sh*t and his clueless lackey ( your GP - recently had a dose change from 150mcg Levo to 100mcg Levo because GP did not like below range TSH. ) to control your life in this manner. What harm will a telling off do if you feel better? F*ck 'em all.

Welcome to our world ( from one of the angriest of forum posters when considering the bull meted out to fellow sufferers - trust me, mine is equally stupid).

Courage ma brave !

SlowDragon
SlowDragonAdministrator

So was this different endo to the one that started you on T3?

We have had loads turn up here with similar tale and disastrous results. Stopping T3, causes vitamin levels to crash right out and gut function collapses. Vitamin levels so low then stop thyroid hormones working. You feel severely hypo, but TSH suppressed so then dose gets reduced even further

You are obviously now very under medicated.

You will need 25mcg dose increase and retest after 6 weeks

Highly likely your vitamin levels are dire. Have you got recent vitamin D, folate, ferritin and B12 levels

Post results including ranges

Suggest you print this out to give to GP, MP, Endo etc - pages 5-8

patients-association.org.uk...

Excellent video series- free to view tonight only

thethyroidsecret.com/specia...

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.

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...

Low stomach acid can be an issue

Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

thyroidpharmacist.com/artic...

drmyhill.co.uk/wiki/hypochl...

scdlifestyle.com/2012/03/3-...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

Probiotics

carolinasthyroidinstitute.c...

Hensam
Hensam in reply to SlowDragon

Yes different endo, the endo who started me on T3 has left the hospital.

I take 3000iu Better You spray for vitamin D

Total 25 OH vitamin D 56.3 (50 - 75 vitamin D may be suboptimal and long-term may lead to clinical effects. Advise on safe sun exposure and diet. Supplementation may be indicated)

I take 5mg folic acid once a day on prescription

Folate 2.1 (2.5 - 19.5)

I have B12 injections for B12 deficiency symptoms

Vitamin B12 442 (190 - 900)

I take 1 iron tablet a day for iron deficiency

Ferritin 46 (15 - 150)

Thanks

SlowDragon
SlowDragonAdministrator in reply to Hensam

There's a battle between different endo's - we end up as bl****dy piggy in the middle

Email Louise at Thyroid Uk for list of recommended thyroid specialists

Louise.roberts@thyroiduk.org.uk

But with Hashimoto's we seem to need to get vitamins good and on gluten free diet before T3

dailymail.co.uk/health/arti...

shaws
shawsAdministrator

Why is it that the British Thyroid Association (and there's no love lost by lots of members) have produced the following regarding T3 so the fact is there are few or none Endocrinologists who have read this article? It clearly states that there should be a discussion between Patient and Endo and states that there should be a discussion with the patient ........withdrawal may cause undesirable clinical symptoms.

british-thyroid-association...

Run off a copy and post to your endocrinologists and highlight those parts which apply to you.

shaws
shawsAdministrator

Also on the right-hand column there is a pinned post re the withdrawal of T3 which you can sign. Also make an appointment to visit your local MP (better than a phone call) and state your case.

SeasideSusie
SeasideSusieAdministrator

Hensam I've got my bolshie head on tonight I'm afraid, so please excuse the following rant.

I felt better on Levo and T3 combined but this was stopped by my endo ......... He has said relief of symptoms does not equal evidence T3 worked for me

Errrrmmmm ...... What other evidence is there. You added T3, you felt better. I would ask him why is that not evidence. What would be evidence enough to satisfy him that T3 works. Presumably now you no longer take T3 with your Levo you don't feel so well. Ask him to explain that.

Of course, the real reason he said that is because he's been told not to prescribe it any more due to the cost, but he wont be honest enough to tell you that so he makes up this load of sh1te.

I want to go back to taking T3 but worry about facing a telling off from the endo.

Why worry. Stuff the endo. It's not him who's being kept ill. Tell him if he wont provide it then you'll be forced to source your own. Tell him you thought the NHS was there to help patients be as well as they can be, not keep them ill.

Freaking endos. They haven't got a clue. I hope they all come down with Hypo/Hashi's overnight and are denied treatment for years, and when they complain about their sympoms they should be told they are mentally ill.

There..... I should feel better now I've let that out but I don't :(

**

Some of your symptoms are indicative of low nutrient levels. If you've had vitamins and minerals tested then please post the results, with reference ranges, for comment. If not tested then ask for the following:

Vit D

B12

Folate

Ferritin

**

TPO ANTIBODY 377.3 (<34)

TG ANTIBODY 404.5 (<115)

So this confirms Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results.

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.

SlowDragon has given you some links, if you fancy a bit more reading here's a couple I usually post

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

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

**

It seems as though your GP is as clueless as your endo. There was nothing wrong with these results

Sept 2017

TSH 0.02 (0.2 - 4.2)

FREE T4 21.4 (12 - 22)

FREE T3 4.5 (3.1 - 6.8)

TPO ANTIBODY 377.3 (<34)

TG ANTIBODY 404.5 (<115)

TSH is OK to be suppressed. It's not even a thyroid hormone, it's a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). In this case TSH will be high. If there is enough hormone - and this happens if you take any replacement hormone - then there's no need for the pituitary to send the message to the thyroid so TSH remains low.

As long as FT3 is in range, you are not overmedicated - see thyroiduk.org.uk/tuk/about_... > Treatment Options:

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 article by emailing louise.roberts@thyroiduk.org print it and highlight question 6 to show your doctor.

So reducing your dose from 150mcg to 100mcg - which by the way is too big a reduction in one go, it should be done in 25mcg increments - he's produced these wonderful results and made you very hypothyroid

Oct 2017

TSH 6.30 (0.2 - 4.2)

FREE T4 13.7 (12 - 22)

FREE T3 4.0 (3.1 - 6.8)

Great! So now you have an over range TSH, and a just in range FT4 and FT3. I'd like to know how your GP would feel with these results.

You need to do as SlowDragon has advised, ask for a 25mcg increase in dose, retest in 6-8 weeks with another increase of 25mcg, and continue retesting/increasing until you feel well. Use Dr Toft's article in support of your request for an increase.

SeasideSusie
SeasideSusieAdministrator

Hensam OK, I've seen your vitamin and mineral results now.

I take 3000iu Better You spray for vitamin D

Total 25 OH vitamin D 56.3

The Vit D Council recommends a level of 100-150nmol/L. With your level I would double up and take 6000iu for 3 months then retest. When you've reached the recommended level 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.

**

I take 5mg folic acid once a day on prescription Folate 2.1 (2.5 - 19.5) I have B12 injections for B12 deficiency symptoms Vitamin B12 442 (190 - 900)

Not much to say about these results except that at least you are being treated so I hope your levels are being monitored. You should also be taking a good B Complex to balance all the B vitamins but leave it off for a few days before any thyroid tests if it contains Biotin (B7).

Recommended levels are

Folate - at least half way through range

B12 - very top of range - even 900-1000

**

I take 1 iron tablet a day for iron deficiency Ferritin 46 (15 - 150)

You are not getting the correct treatment. For iron deficiency anaemia see 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.

So you might want to see your GP and ask for the appropriate treatment.

Take each iron tablet 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.

As for Ferritin, 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. Y 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...

So sorry to hear this. I wouldn’t ask for a 25mcg increase, I’d just do it. Then you might feel a bit stronger to start sorting this out.

I’d like you to feel less worried about the endo telling you off and more worried about the desperate effects on your health of poor endo and GP decisions.

There’s lots of good advice above. I’m afraid that having a thyroid problem forces you to deal with medics at least as equals. They have no power over you really, they have to treat you. You know that saying ‘what doesn’t kill me makes me stronger’! Go to it!

All the best to you x

You may also like...