Log in
Thyroid UK
91,635 members105,957 posts

please help

hi all i am new here, my endo has said he can no longer help me since i cannot tolerate teva levo and that my results were never any good on mercury, actavis and wockhardt. i am feeling gradually worse each day. hands very cold, undereyes dark, sore and dry, hard stool, aching in joints, gaining more weight, feeling more tired, heavier periods, losing hair, sweating with exertion. i was diagnosed in 2012. many thanks for any advice.

TSH 4.8 (0.2 - 4.2)

free T4 14.7 (12 - 22)

free T3 3.3 (3.1 - 6.8)

thyroid peroxidase antibody 875 (<34)

thyroglobulin antibody 315.3 (<115)

41 Replies
oldestnewest

Hi, what dose were you on when you had those results as you were under medicated. When on medication we are usually best with tsh in a range of 0.2 to 1.0. Endo is out of order to say he can't help you. As long as your gp is helping you are probably better off without endo.

Reply

25mcg levo, seeing another gp as the other one not being helpful

Reply

Have you been on 25mcg since diagnosis ? what problems are you having with all the Levo brands ?

You are undermedicated so it's possible you have not been given a high enough dose.

Reply

no i was on 175 before - symptoms on teva are vomiting, diarrhoea, nausea, feeling unsettled. previous brands just did not produce good enough results for the endo

Reply

And what problems was that causing ?

Reply

the same

Reply

But you could tolerate 175 ?

Reply

thank you no i couldn't. i kept going back to the gp more than once about my digestive symptoms and they diagnosed me with ibs and sent me away

Reply

25mcg is a very low starter dose usually reserved for the frail or those with a known heart condition. You should have had a blood test after you had been on levo for 6 weeks and dose increased by 25mcg increments every 6 weeks untill you are in the 0.2 to 1.0 range or feel back to normal. A lot of people don't get on well with teva.

It can be difficult to find a gp or endo who knows how to treat thyroid problems as they are very poorly trained in this area.

Reply

thank you i was reduced to 25mcg levo from 175

Reply

Well, what a useless endo. Patient doesn't conform to whatever is the norm so let's give up on her! Charming!

There could be a couple of reasons why you're not doing well.

1) For some reasons tablet form of Levo doesn't suit you, well your endo should know that there is a liquid form so he should maybe have tried that. See thyroiduk.org/tuk/treatment... and click on 2nd purple band down - UK Synthetic Liquid Thyroxine

2) Maybe you just don't do well on T4 and you need T3

3) Does he realise that you have autoimmune thyroiditis aka Hashimoto's as confirmed by your high antibodies? Because antibodies attack the thyroid and gradually destroy it, and the antibody attacks cause results and symptoms to fluctuate, maybe that is why he doesn't understand your results.

Do you have any results where you are on the same dose of Levo and your results have differed considerably? Is that what he doesn't understand?

Have you had vitamins and minerals tested - Vit D, B12, Folate, Ferritin? If so please post results with reference ranges, say if you are supplementing and what doses.

3 likes
Reply

thank you my endo says he will not give me liquid levo. i was previously on 175 and my results were

TSH 1.50 (0.2 - 4.2)

free t4 19.1 (12 - 22)

free t3 4.0 (3.1 - 6.8)

will post vitamin levels now

Reply

Why wont your endo give you liquid Levo? You should challenge him. From what you said you cannot tolerate any of the tablet brands. What do they expect you to do? Not be treated and eventually go into myxoedema coma and die?

How did you feel with those results? They're not bad although FT3 could be higher, indicating the need for T3 to be added to your Levo.

Reply

thank you i still had puffy eyes, constipation, heavy periods, dry skin, hair loss, weight gain, feelig cold, sweats with exertion. nothing really changed.

Reply

Those symptoms could be due to the Hashi's (you can get hypo and hyper type symptoms with Hashi's). As Teva is known to have caused many side effects for lots of members, can you ask to go back to one of the other brands and try again, but you would have to address the Hashi's as well.

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 low nutrient levels or deficiencies are the result. You could also have leaky gut so addressing that is important. SlowDragon has information and links about that and I'm sure she will respond when she is around.

5 likes
Reply

Well, your free T3 was still much lower than optimal (so you probably needed some T3) and you could have been sensitive to some of the fillers in the tablets

Reply

i will ask endo again about liquid levo but just worried about feeling like a nuisance. he keeps getting his receptionist to contact me

Reply

Don't think about yourself as being a nuisance. You are a patient who is very unwell and whose doctor is not treating you appropriately, he is letting you down. What you could do is offer to try another brand of Levo tablets again, other than Teva, and say if you still have problems you would like to try the liquid Levo. That is a good compromise and will show that you are willing to stay on tablets if at all possible.

2 likes
Reply

thanks susie you have been most helpful

Reply

With they amount they get paid to be arrogant idiots, you are justified in being a "nuisance". The British public are paying taxes to fund that endo to get you proper treatment - don't waste their money - make him work for it.

Reply

On 175mcg you still had low FT3 and therefore are a poor converter

Your TSH was still too high

You need to get back to around this dose, get vitamin levels extremely good and very likely to need to be strictly gluten free

Then add in small dose of T3

2 likes
Reply

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 hypothyroidism in Uk is due to Hashimoto's

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels 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 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

Persistent low vitamins with supplements suggests coeliac disease or gluten intolerance

gluten.org/resources/health...

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...

which Levothyroxine was the least bad? Stick on that one while getting gut Better

Levo dose must be increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half half way in range

What were your results on 175mcg?

You were probably not over medicated, but had low vitamin levels

With Hashimoto's we must get vitamins optimal and Levo dose increased enough to bring TSH down to around one and FT4 towards top of range

Gluten free diet helps or for many is absolutely essential

Then if FT3 remains low, like many with Hashimoto's you may need the addition of small dose of T3

Your endo was probably a Diabetes specialist.

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

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

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

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased

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

2 likes
Reply

can i retake t3?

Reply

Ahhh well - classic case after T3 stopped then

We have seen hundreds

So you had T3 in the past?

Started by one endo

Stopped by another?

Did you feel better on T3?

Vitamin levels crash right out when T3 is removed

Typical posts after T3 stopped showing this

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

You will need to recover, increase Levo and vitamins and go gluten free

Not ready to add T3 till then

Reply

i just don't know what to do for the best as I am really lost. yes my t3 was stopped by one endo and started by another. i felt better on t3 as well

Reply

Stick on here. Learn as much as possible and take control yourself

I am just so sorry you, like thousands of others on here, have been caught up in a war between forward thinking endo's recognising we need T3 and arrogant dinosaurs taking it away

However you do probably need to be strictly gluten free as well, especially if on T3

Recent mass removal of T3 off course mainly due to outrageous price charged to NHS.

1 like
Reply

on 175 my results were

TSH 1.50 (0.2 - 4.2)

free t4 19.1 (12 - 22)

free t3 4.0 (3.1 - 6.8)

Reply

Can we see results from when on T3 as well

Say what dose of T4 and T3

Reply

of course, on 75mcg levo and 10mcg t3

TSH <0.02 (0.2 - 4.2)

free t4 20.8 (12 - 22)

free t3 5.6 (3.1 - 6.8)

TSH <0.02 (0.2 - 4.2)

free t4 20.5 (12 - 22)

free t3 5.3 (3.1 - 6.8)

Reply

Pretty perfect

How did you feel?

Got vitamin results from then ?

I guess endo had seizure at low TSH

Reply

no she like the TSH, other endo took me straight off it when unstabilised again

Reply

Can I ask why you're not seeing the endo who was happy with your low TSH but one that seems hell bent on making you very very ill?

Reply

The first one left the hospital

Reply

i felt fine back then

Reply

SlowDragon Oh, you're quick :D

1 like
Reply

how many more are we going to see like this

These ***** Endo's who take T3 away

2 likes
Reply

SlowDragon - I just don't know any more :( What do you do? Day after day we hear more and more and I expect it's just the tip of the iceberg. What about the people who don't know about the forum? So many, many people being left so ill by so called specialists who don't understand anything at all about what they're supposed to be treating :(

I get so upset and angry about it (you might realise that from some of my replies :D )

8 likes
Reply

It makes my blood boil at the arrogance of the medical profession

It takes bl***y long enough to get diagnosed and finally on T3, then some ****head takes it away

We MUST get new NICE guidelines changed

8 likes
Reply

where to post vitamin levels please?

Reply

On new post perhaps? Or here

Either

Reply

Thyroid UK are collecting evidence of malpractice due to removing clinically needed T3

Please consider sending a brief outline of this. How T3 improved you and the subsequent disaster since it was stopped. I would include the dire vitamin levels

thyroiduk.org.uk/tuk/get_in...

Recent debate in Scottish parliament about T3

scottishparliament.tv/meeti...

5 likes
Reply

You may also like...