Hi

New to this and not new to hypothyroid which I was diagnosed with 6 years ago. When can I expect to feel better on 25mcg levo? Was on much higher doses before. I haven't put ranges against results of range is the same.

Thanks

Oct 17

TSH 5.8 (0.2 - 4.2)

Free T4 13.9 (12 - 22)

Free T3 4.0 (3.1 - 6.8)

Ferritin 58 (15 - 150)

Iron 9.3 (6 - 26)

Transferrin saturation 14 (12 - 45)

Taking 25mcg levothyroxine because of suppressed TSH

Sep 17

TSH 0.03 (0.2 - 4.2)

Free T4 20.9 (12 - 22)

Free T3 4.1 (3.1 - 6.8)

Vitamin D total 65.3 (50 - 75 suboptimal)

Taking 150mcg levothyroxine and T3 taken away because endo didn't trust it

Jan 2017

TSH 1.80 (0.2 - 4.2)

Free T4 15.7 (12 - 22)

Free T3 4.3 (3.1 - 6.8)

Ferritin 110.5 (15 - 150)

Folate >20 (2.5 - 19.5)

Vitamin B12 538.5 (190 - 900)

Vitamin D total 70.5 (50 - 75 suboptimal)

Taking 175mcg levothyroxine and 10mcg T3 due to high TSH

Nov 2016

TSH 3.80 (0.2 - 4.2)

Free T4 18.2 (12 - 22)

Free T3 5.0 (3.1 - 6.8)

Taking 150mcg levothyroxine and 10mcg T3 not sure why

May 2016

TSH 6.80 (0.2 - 4.2)

Free T4 13.8 (12 - 22)

Free T3 4.1 (3.1 - 6.8)

Ferritin 187 (15 - 150)

Taking 50mcg levothyroxine due to suppressed TSH and endo wanted me to start again with dose

Jan 2016

TSH 0.08 (0.2 - 4.2)

Free T4 22.7 (12 - 22)

Free T3 4.6 (3.1 - 6.8)

Thyroid peroxidase antibodies 404.5 (<34)

Thyroglobulin antibodies 257.3 (<115)

Ferritin 16 (15 - 150)

Iron 9 (6 - 26)

Folate 5.9 (2.5 - 19.5)

Vitamin B12 548 (190 - 900)

Vitamin D total 72 (50 - 75 suboptimal)

Taking 100mcg levothyroxine and 10mcg T3 due to ongoing symptoms

Nov 2015

TSH <0.02 (0.2 - 4.2)

Free T4 20.5 (12 - 22)

Free T3 5.2 (3.1 - 6.8)

Ferritin 15 (15 - 150)

Folate 10.1 (2.5 - 19.5)

Vitamin B12 694 (191 - 663)

Taking 75mcg levothyroxine and 10mcg T3. T3 given due to poor conversion

Aug 2015

TSH 1.21 (0.2 - 4.2)

Free T4 19.2 (12 - 22)

Free T3 4.1 (3.1 - 6.8)

Taking 175mcg levothyroxine

B12 injections started June 2017

Ferrous fumarate restarted Feb 2017 because of below range MCV iron infusion done May 2016

Folic acid prescribed Nov 2016

Vitamin D 3000iu started March 2015 but taking 800iu from 2013 Dec until then

28 Replies
oldestnewest

25 mcg is a starter dose for the elderly or those with an underlying heart condition, the normal starting dose is 50mcg. You normally have repeat bloods after 6 weeks and dose increments of 25 mcg until TSH is low in range and symptoms have gone. It often takes at least 6 months to reach an optimum dose.

So have you been on 25 mcg for 6 years? If you have recent blood results with ranges post them in a new post and I’m sure some of the more knowledgeable members can advise.

Just reread your post, more details about previous doses and why the reduction might be helpful.

Do I post a new thread with all results?

No, you can post them here. :)

That might be best. There are some very helpful and knowledgeable people on this forum

Amelie

You won't feel better on 25mcg.

There is so much you haven't told us. Please give as much information as possible so that members can help.

*Test results with reference ranges and dose at time tested.

*Details of dose changes, and why.

*Have you had T3 added and taken away, if so why?

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

*Have you had vitamins and minerals tested:

Vit D

B12

Folate

Ferritin

Iron panel

Full blood count

If so give results with ranges, say if you are supplementing and with what

*Anything else relevant.

On this thread?

Yes

Well you're currently undermedicated. What about the rest of the information requested?

Can you make just one post or it's going to get too confusing with multiple posts for each bit of information.

Sorry this is getting confusing and I am only recalling the numbers from memory. When I get home can I edit this post and include everything?

Yes, that would be best.

Ok will do. Sorry

Might take a while

That doesn't matter, as long as all relevant information is there so members can help.

If I need to include anything before Aug 2015 let me know, I am wary about the length of the post I've just done

Look back at my earlier post where I listed the information we need, include all that and we can go from there.

Done it

So am I reading this right? Your GP cut your dose from 150mcg to 25mcg because your TSH was suppressed? If so, I despair for you!

Yes

That's unbelievable. What an absolute idiot of a doctor. I wish I could tell you we don't see that very often, but if anything, seem to be seeing it more and more. Why on earth reduce your dose so much?? Reducing it by 25mcg would be one thing. Reducing it *to* 25mcg is well, gobsmacking. SeasideSusie - a contender for GPidiot of the Week?

Your results on 150mcg were good. A suppressed TSH means nothing if your levels of FT3 and FT4 are in range, and they were. You're never going to feel better on 25mcg - you need your dose putting back up to 150mcg.

Is there another doctor in the practice you can see?

Jazzw

a contender for GPidiot of the Week?

Absolutely, and I think he's scored the most points this week so he gets the prize but I'm not sure if it's the endo or GP who has made this ridiculous reduction. Whoever it is should be sacked!

I can't believe there are so very many uninformed doctors where thyroid is concerned, it's absolutely tragic!

Ameliej Any doctor that reduces dose of 150mcg Levo to just 25mcg Levo in one go is a sadist, not only that he hasn't got a clue about treating hypothyroidism and should be in a different job which doesn't involve people's health.

If I'm understanding correctly your doses at the time of the results -

Working from Aug 2015 with

TSH 1.21 (0.2 - 4.2)

Free T4 19.2 (12 - 22)

Free T3 4.1 (3.1 - 6.8)

Taking 175mcg levothyroxine

then on the strength of those results dose changed to 75mcg Levo plus 10mcg T3 - well the T3 was needed but that was a massive reduction in Levo, it should be done gradually not by 100mcg. On this dose you then have these results:

Nov 2015

TSH <0.02

Free T4 20.5

Free T3 5.2

and your Levo was then increased to 100mcg plus 10mcg T3 because you still had symptoms and that increase produced these results:

Jan 2016

TSH 0.08

Free T4 22.7

Free T3 4.6

so endo reduced your dose to 50mcg Levo only due to suppressed TSH and because he wanted you to start again with dose. I think that clearly showed he didn't know what he was doing. Your TSH was higher than in November, so less suppressed, and your FT3 lower than November, so you probably had the same, if not more, symptoms.

So this massive reduction then produced these results:

May 2016

TSH 6.80

Free T4 13.8

Free T3 4.1

which clearly shows you were very hypothyroid so your endo gave you a massive increase to 150mcg levothyroxine and 10mcg T3 which then produced these results:

Nov 2016

TSH 3.80

Free T4 18.2

Free T3 5.0 and the high TSH prompted an increase in Levo to 175mcg plus 10mcg T3 to give:

Jan 2017

TSH 1.80 (0.2 - 4.2)

Free T4 15.7 (12 - 22)

Free T3 4.3 (3.1 - 6.8)

Yes, it reduced your TSH but your free Ts are a lot worse so he reduced your Levo again to 150mcg and removed T3 taken away "because endo didn't trust it". Was this a different endo? You had clearly shown a need for T3 so it should never have been removed. So this dose produced:

Sep 17 TSH 0.03 (0.2 - 4.2)

Free T4 20.9 (12 - 22)

Free T3 4.1 (3.1 - 6.8)

so now you have your Levo reduced to 25mcg due to suppressed TSH, which is actually higher than in Nov 2015 when TSH was <0.02 And now your measly 25mcg Levo has produced:

Oct 17 TSH 5.8 (0.2 - 4.2)

Free T4 13.9 (12 - 22)

Free T3 4.0 (3.1 - 6.8)

So what has now been said about your over range TSH and your low in range free Ts? What is your endo going to do now he has plunged you back into a hypo state again.

This endo is playing at pretending to know how to treat hypothyroidism, he will be a diabetes specialist who doesn't know much at all about thyroid disease. Run away as fast as you can. And if your GP has seen these results and hasn't intervened then run away from your GP too.

When TSH is suppressed as long as your FT3 is in range you can't be overmedicated. 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.

So now you need to ask for an immediate increase in your Levo, it needs to be done gradually (as should decreases) so 25mcg now, retest in 6 weeks then another 25mcg increase, then repeat and repeat until FT4 and FT3 are at levels where you feel well and taking into account Dr Toft's comments if necessary.

**

Thyroid peroxidase antibodies 404.5 (<34)

Thyroglobulin antibodies 257.3 (<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. This will be one reason your results are jumping all over the place. Unfortunately, most doctors attach little or no importance to antibodies and don't understand what Hashi's does.

The antibody attacks cause fluctuations in symptoms and test results. When the antibodies attack, the dying cells dump a load of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range. These are called 'Hashi's flares' or 'swings'. You may get symptoms of being overmedicated (hyper type symptoms) to go along with these results that look as though you are overmedicated. Unless a doctor knows about Hashi's and these swings, then they panic and reduce or stop your thyroid meds.

The hyper swings are temporary, and eventually things go back to normal. Test results settle back down and hypo symptoms may return. Thyroid meds should then be adjusted again, increased until you are stable again.

Read, learn and educate yourself because you are going to have to help yourself here.

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 go hand in hand and very often the result is low nutrient levels.

Ferritin - Ferrous fumarate restarted Feb 2017 because of below range MCV iron infusion done May 2016

Oct 2017: 58

Jan 2017: 110.5 (15 - 150)

May 2016: 187

Jan 2016: 16 (15 - 150)

Nov 2015: 15 (15 - 150)

How much ferrous fumarate are you taking now? Are you being monitored by a haematologist?

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. You can help to raise and maintain 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...

**

Vit D - Vitamin D 3000iu started March 2015 but taking 800iu from 2013 Dec until then

Sept 2017: 65.3 (50 - 75 suboptimal)

Jan 2017: 70.5 (50 - 75 suboptimal)

Jan 2016: 72 (50 - 75 suboptimal)

Are you taking 3000iu daily now? Do you buy this yourself?

The Vit D Council recommends a level of 100-150nmol/L. You should really boost your level as it is still suboptimal. I would suggest that you take 5000iu daily for the next 3 months then retest, privately if necessary. If you haven't reached the recommended level then continue with 5000iu daily until you do, retesting after another 3 months. Once you've reached the recommended level then you'll need a maintenance dose and looking at your results it might be 3000iu 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/

As you have Hashi's, for better absorption you should take an oral spray eg BetterYou which does a 3000iu dose so double that and take 6000iu daily until you reach the recommended level.

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.

BetterYou do a combined D3/K2-MK-7 as well as D3 alone.

**

B12 injections started June 2017

In which case this is being looked after, but if you want any advice about B12 then the Pernicious Anaemia Society forum is the place to ask healthunlocked.com/pasoc

Folic acid prescribed Nov 2016

And it looks as though it is doing it's job. However, when supplementing B12 we need a good B Complex to balance ALL the B vitamins.

**

The absorption problems caused by Hashi's can be helped, check out SlowDragon's reply to this post which contains lots of information and links healthunlocked.com/thyroidu...

Thanks yes different endo removed the T3. Endo hasn't said anything about current results and GP hasn't intervened either

I am aware I have Hashimotos and tried to talk to GP and endo about it but they have cut appointments short with me

Not on any ferrous fumarate and no longer monitored for iron deficiency and I increased vit D to 4000iu from 3000iu 2 weeks ago

First thing is run as far as possible from this endo, obviously hasn't a clue

Good that you are understanding Hashimoto's.

SeasideSusie has given her excellent vitamin advice

But you also need to look at gluten

With Hashimoto's, until it's under control, our gut can be badly affected. Low stomach acid can lead to poor absorption of vitamins. Low vitamin levels stop thyroid hormones 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 by the vast majority of medics here in UK (makes you weep)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

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...

Importance of magnesium

hypothyroidmom.com/two-vita...

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 and most consistent results

Email Louise at a Thyroid UK for list of recommended thyroid specialists louise.roberts@thyroiduk.org.uk

Amelie

If ferrous fumarate was restarted Feb 2017 why aren't you on it now? If your results still show iron deficiency anaemia then you should be. If no longer iron deficient then you need to get your ferritin up to at least 70, 100 would be better, so go the liver route for that.

Doctors wont talk about antibodies and Hashi's because they don't understand it. Deal with it yourself, that's the only thing you can do.

With your current D3 level, and the fact that it is now winter and we can't make D3 naturally, your level will fall as the stores are used up, so increase again to the 6000iu of oral spray and make sure you take the cofactors.

Don't bother about the endo, he is useless, sack him. If you want to see one then email louise.roberts@thyroiduk.org for the list of thyroid friendly endos, ask for feedback on the forum about any in your area, then ask your GP for a referral to one of your choice. As for your GP, if he isn't supportive and is ignoring your results, see a different one or change surgeries. None of these doctors are doing much to help you.

I think it is totally wrong that one endo can give you T3, you show that you do well on it, then another one can take it away just because he has a different view and ignores the fact that it has helped. If you show a clinical need there are ways of going about trying to get it reinstated, I think SlowDragon may have some links about that.

Thanks results still show iron deficiency but just not on iron

Then you have to talk to a doctor about this and if necessary be referred on to a haematologist.

There's a good link on British Thyroid Association- but their website has been down for a few days

But this is worth noting from Patients Association

patients-association.org.uk...

You may also like...