Newbie!: Hi! How long till I feel better on 25mcg... - Thyroid UK

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Newbie!

Kamirra profile image
15 Replies

Hi! How long till I feel better on 25mcg Levo please? Diagnosed 2011 with hypothyroid and my symptoms are

Dry and cold and pale skin

Cold hands and feet

Tiredness

Nails splitting

Loss of appetite

Dry eyes and ears

Depression

Feeling slowed down

Dizzy spells

Joint pain

Weight gain

Heavy cycles

Ears ringing

Poor stamina

Thankyou!

OCT 2017

TSH 5.3 (0.2 - 4.2)

FREE T4 12.1 (12 - 22)

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Kamirra profile image
Kamirra
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15 Replies
Clutter profile image
Clutter

Welcome to the forum, Kamirra.

Sounds like you are undermedicated. Can you post your recent thyroid results and ranges and we can advise whether you are optimally dosed on 25mcg.

Kamirra profile image
Kamirra in reply to Clutter

TSH 5.3 (0.2 - 4.2)

FREE T4 12.1 (12 - 22)

Clutter profile image
Clutter in reply to Kamirra

Kamirra,

You are undermedicated on 25mcg. Ask your GP for a dose increase.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.3 - 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.

You should have a follow up thyroid test 6-8 weeks after increasing Levothyroxine. Arrange an early morning and fasting (water only) blood draw when TSH is highest, and take Levothyroxine after your blood draw.

SeasideSusie profile image
SeasideSusieRemembering

Kamirra

Your question is one we see almost daily here, and very often it's the result of doctors not knowing how to treat hypothyroidism.

Can you give us some more information please.

Have you always been on 25mcg?

If on higher doses, why has it been reduced?

Can you give us results from when on higher doses and say why the change.

Have you got raised thyroid antibodies confirming autoimmune thyroid disease aka Hashimoto's?

Have you ever had T3 prescribed and has it been taken away again, if so did the doctor who originally prescribed it remove it or was it a different doctor?

Have you had vitamins and minerals tested, if so please post results with ranges and say if you are supplementing and what dose:

Vit D

B12

Folate

Ferritin

Iron Panel

Full Blood Count

Kamirra profile image
Kamirra in reply to SeasideSusie

Endo told me to start again from 150mcg due to TSH 0.03 (0.2 - 4.2) FREE T4 20.8 (12 - 22)

TPO ANTIBODY 477 (<34)

TG ANTIBODY 257.3 (<115)

Was on T3 which helped and different endo took it away

I don't have vits and mins on me yet

Thankyou

SeasideSusie profile image
SeasideSusieRemembering in reply to Kamirra

Kamirra

Like virtually everyone here who has seen an endo, it's most likely that yours is a diabetes specialist who hasn't got a clue how to treat hypothyroidism.

What was the reason for asking you to start again when your results on 150mcg Levo were

TSH: 0.03 (0.2 - 4.2)

FREE T4: 20.8 (12 - 22)

If it was because of you suppressed TSH then he is utterly wrong. Your FT4 is in range and he should have tested FT3 because you can't be overmedicated if FT3 is within range.

Suppressed TSH is not a problem as long as FT3 is within range. TSH is 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.

Unfortunately, most doctors seem to have a bypass where this information is concerned.

We frequently hear about one endo giving T3, the patient doing well, that endo leaves and a new endo takes the T3 away regardless of how well the patient has been. Do you have any results of when you were taking T3 as well as Levo? Can you post them so we can see what they were when the new endo removed your T3.

**

TPO ANTIBODY 477 (<34)

TG ANTIBODY 257.3 (<115)

These are at the root of your problem. Your high antibodies mean that you are positive for autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results.

Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. This could be why your dose has been changed. You need to read, learn, understand and help yourself where Hashi's is concerned.

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 can very often result in low nutrient levels or deficiencies (removing T3 can cause this as well). It's very likely that you have some low levels. Unless vitamins and minerals are at optimal levels then thyroid hormone can't work. So it's important to get them tested and post the results and we can make further suggestions.

Kamirra profile image
Kamirra in reply to SeasideSusie

Thankyou I told my endo I still had hypo symptoms which didn't improve and I didn't know why. He said he didn't know why either so reduced me back down to 50mcg and if all else fails in not being able to establish a cause of my symptoms he will discharge me

SeasideSusie profile image
SeasideSusieRemembering in reply to Kamirra

Kamirra

if all else fails in not being able to establish a cause of my symptoms he will discharge me

Really!!! If he can't figure out why you still have symptoms, he will wash his hands of you and leave you to it!!! And he calls himself a doctor!!! Jeez!

Kamirra profile image
Kamirra in reply to SeasideSusie

On 75mcg levo and 2 quarters of T3

TSH <0.02 (0.2 - 4.2)

FREE T4 20.8 (12 - 22)

FREE T3 5.6 (3.1 - 6.8)

SeasideSusie profile image
SeasideSusieRemembering in reply to Kamirra

Kamirra

How did you feel on those doses and with those results?

They're pretty good, there was even room for a slight increase in your T3 if you were still symptomatic. But we don't see many members mention higher doses than 10mg T3, perhaps they're limited to not prescribing any more than that daily!

Kamirra profile image
Kamirra in reply to SeasideSusie

Yes I felt almost fully well with those results

SeasideSusie profile image
SeasideSusieRemembering in reply to Kamirra

So that is where you need to be and you need your T3 back, either by getting it prescribed again or self sourcing. Personally, I would find a new endo, one who specialises in thyroid, and see if you can get your T3 back.

Email dionne.fulcher@thyroiduk.org for the list of thyroid friendly endos then ask for feedback on the forum for any that you can get to. If that fails, and you wish to self source, ask for suppliers in a new post.

SlowDragon profile image
SlowDragonAdministrator

Hi

Sorry you got yet another useless endo. As SeasideSusie says probably a Diabetes specialist who obviously knows nothing about Hashimoto's

It's highly likely you have extremely low Vitamin D, folate, ferritin and B12 as result of having T3 stopped and also now dose of Levothyroxine reduced too

You need urgent 25mcgs dose increase in Levothyroxine and retest after 6 weeks, likely to need further increases always testing after each increase

Ask GP to test vitamins if not been done recently.

Add results and ranges to this post if you have them already

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

Essential to test vitamin D, folate, ferritin and B12.

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

Low vitamin levels stop 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

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...

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

Please email brief outline of this. How T3 improved you and the subsequent disaster since it was stopped. Include vitamin results once you have them

dionne.fulcher@thyroidUK.org

Email Thyroid UK also for list of recommended thyroid specialists

Kamirra profile image
Kamirra in reply to SlowDragon

I have vits and mins now thankyou

silverfox7 profile image
silverfox7

Possibly never! Welcome to the forum. 25 mcg is a low starting dose just to get your body used to the meds. You should have been told to retest after 6 weeks and then adjust your dose. Seen the good advice higher up the thread so to add something different have a look at the Thyroid Uk site as there is loads of useful info etc. Thyroid Uk is NHS Choices for thyroid dysfunction so if any of their literature helps you case then print and show to your doctor and tell him where you found it.

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