Hi: Hello when can I expect to feel well again on... - Thyroid UK

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Selina16 profile image
17 Replies

Hello when can I expect to feel well again on 25mcg levo? Was diagnosed in 2011. Thanks!

TSH 6.10 (0.27 - 4.20 mIU/L)

Free T4 12.9 (12.00 - 22.00 pmol/L)

Free T3 3.1 (3.10 - 6.80 pmol/L)

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Selina16 profile image
Selina16
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17 Replies
cjrsquared profile image
cjrsquared

You are under medicated, most people feel better with a TSH around 1 not just in range, yours is over range. 25 mcg is only a very low starting dose, normally you have repeat blood tests after 6to 8 weeks and dose increments of 25 mcg until TSH is around 1. You need to go back to your gp for an increase.

Selina16 profile image
Selina16 in reply to cjrsquared

Thanks I was feeling well on much higher dose until GP reduced it. I don't think he knows what he is doing. It was reduced from 225mcg levo and 20mcg t3

SeasideSusie profile image
SeasideSusieRemembering in reply to Selina16

Selina - there's obviously a lot more to your thyroid story than what you've told us, can you give more information please.

Do you have thyroid antibodies - hashimoto's?

As your dose has been changed - why were the changes made, what were the results and dose changes?

Have you had vitamins and minerals tested? If so please post results, particularly

Vit D

B12

Folate

Ferritin

Iron panel/full blood count/haemoglobin

Give us the full picture and members will be able to comment.

Selina16 profile image
Selina16 in reply to SeasideSusie

Thanks for reply I have raised antibodies so I am guessing Hashimotos. Changes were made to dose because of results

TSH <0.02 (0.2 - 4.2)

Free T4 22.8 (12 - 22)

Free T3 4.3 (3.1 - 6.8)

Taking 225mcg levothyroxiner and 20mcg T3 at the time.

I will post vitamins and minerals below.

SeasideSusie profile image
SeasideSusieRemembering in reply to Selina16

Selina - yes you have Hashimoto's which is where antibodies attack and gradually destroy the thyroid. Antibodies fluctuate and when they attack the thyroid the dying cells dump a load of hormone into the blood. This can show as high/over range free Ts and low/suppressed TSH, making it look as though you are overmedicated, and it can cause hyper type symptoms. These attacks are temporary and things will settle down again, results will stabilise and maybe even hypo type symptoms occur. Adjusting dose of thyroid meds during these 'hashi's flares' can help, but readjustment needs to be made when things are back to normal.

Your GP reduced your dose, presumably because of this, but those results really didn't warrant it unless you were experiencing hyper type symptoms.

As you were on 225mcg Levo and 20mcg T3 at the time, I sincerely hope any reduction was minimal and you weren't reduced to 25mcg Levo in one jump.

You can help reduce the antibody attacks by adopting a strict gluten free diet which has helped many Hashi's members here.

Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.

Also, supplementing with selenium l-selenomethionine 200mcg daily and keeping TSH suppressed can help.

Your current results show that you are grossly undermedicated and you urgently need an increase. The aim of a treated hypo patient generally is for TSH to be 1 or below, and when on Levo only most people feel best when FT4 and FT3 are in the upper part of their ranges, and when T3 is added into the mix then TSH can become suppressed, FT4 will generally be lower in range and FT3 should be nearer the top of the range.

I would ask to be referred back to your endo to have your medication sorted and the reintroduction of T3.

Selina16 profile image
Selina16 in reply to SeasideSusie

Hi it was done in one go

SeasideSusie profile image
SeasideSusieRemembering in reply to Selina16

Well that was pretty stupid of your doctor, I bet you must have felt dreadful. Changes in dose should be done gradually.

Selina16 profile image
Selina16 in reply to SeasideSusie

Thanks yes I feel pretty awful right now. TIredness, constipation, dry skin, muscle cramps, breathlessness, pins and needles, rapid weight gain, puffy eyes and ankles, hair loss, difficulty swallowing, goitre and sweats (?) and tremor (?)

SeasideSusie profile image
SeasideSusieRemembering in reply to Selina16

Muscle cramps can be low Vit D or magnesium, pins and needles and tremors can be low B12 - check that list for B12 Deficiency. Some symptoms will be nutrient deficiencies, some will be the result of your low dose of Levo plunging you back into Hypothyroidism.

Boohbette17 profile image
Boohbette17 in reply to Selina16

OMG!!! Thats absurd/ such a drop ... I feel so bad for you! His medical license should be removed !! MASSIVE HUG TO YOU!!!🌺🌈

Selina16 profile image
Selina16

Ferritin 77 (30 - 400)

Haemoglobin estimation 118 (115 - 150)

Haematocrit 0.400 (0.370 - 0.470)

MCV 76.1 (80 - 98)

MCHC 367 (310 - 350)

MCH 28.1 (27 - 32)

Platelet count 243 (140 - 400)

Iron 7.8 (6.0 - 26.0)

Folate 2.1 (2.5 - 19.5)

Vitamin B12 202 (190 - 900)

Vitamin D 31.3

(<25 severe vitamin D deficiency

25 - 50 vitamin D deficiency

50 - 75 vitamin D may be suboptimal

>75 adequate)

Taking 210mg ferrous fumarate 1x a day since Feb 2017, 5mg folic acid 1x a day since 2016, 800iu 1x a day since 2013. Results above done 2 months ago

SeasideSusie profile image
SeasideSusieRemembering in reply to Selina16

Ferritin 77 (30 - 400)

Haemoglobin estimation 118 (115 - 150)

Haematocrit 0.400 (0.370 - 0.470)

MCV 76.1 (80 - 98)

MCHC 367 (310 - 350)

MCH 28.1 (27 - 32)

You have iron deficiency anaemia and generally the treatment prescribed for that is 1 Ferrous Fumarate two or three times daily. Your 1 x FF is too low, you should ask your GP to increase this.

NICE Clinical Knowledge Summary for treatment of iron deficiency anaemia

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.

Take each iron tablet with 1000mg Vit C to aid absorption and help prevent constipation, and take iron four hours away from thyroid meds and two hours away from any other medication and supplements as it affects their absorption.

**

Folate 2.1 (2.5 - 19.5)

Vitamin B12 202 (190 - 900)

Your folic acid supplement hasn't exactly done much for your folate deficiency has it? You should speak to your GP about this. For us Hypos folate needs to be at least half way through it's range.

Your B12 is extremely low. Anything below 500 can cause neurological problems, and for us Hypos it's recommended to be very top of range, even 900-1000. Were you asked about any signs and symptoms of B12 deficiency - you can check those here b12deficiency.info/signs-an...

If you have any you must tell your GP and ask to be tested for Pernicious Anaemia. In fact, pop over to the Pernicious Anaemia Society forum here on Health Unlocked for further advice healthunlocked.com/pasoc

You will need to stop the folic acid before being tested for PA, but the PA forum will advise. Post your folate, B12, ferritin and iron results there.

**

Vitamin D 31.3

Has your GP not said anything about the fact that supplementing 800iu D3 since 2013 hasn't exactly helped raise your level out of the deficiency category? The recommended level is 100-150nmol/L according to the Vit D Council.

Your best bet is to buy some D3 softgels like these bodykind.com/product/2463-b... and take 10,000 daily for 4-6 weeks then reduce to 5000iu daily. Retest after 3 months, privately if necessary with City Assays home fingerprick blood spot test vitamindtest.org.uk/index.html

When you've reached the recommended level reduce to a maintenance dose for life, start with 5000iu alternate days and see how that goes, you may need to reduce in the summer. It's recommended to retest once or twice a year to stay within the recommended range.

When taking D3 there are important cofactors needed 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 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...

**

Optimising all your vitamins and minerals will help (although your GP wont know anything about this as they're not taught nutrition). Also, addressing the Hashi's should help, but it's imperative to get your thyroid meds increased.

Selina16 profile image
Selina16 in reply to SeasideSusie

No doctor hasn't commented on the 800iu D3. I was thinking of adding the T3 back in since I have lots left over but not sure if I need my endo's guidance with this.

SeasideSusie profile image
SeasideSusieRemembering in reply to Selina16

Personally, I think you should start by increasing Levo to get your FT4 up a bit then add in T3 later on, but whatever your comfortable with. I think seeing your endo is a good idea, maybe he understands about the Hashi's flares and fluctuations and can tell your GP how any future dose changes should be made.

Boohbette17 profile image
Boohbette17 in reply to SeasideSusie

SeasideSusie, I stand in awe of your knowledge! So glad to be amidst you on this voyage... Really... Wow😊💗

SlowDragon profile image
SlowDragonAdministrator

Increasing supplements and increasing Levo (probably in 25mcg steps for at least 6 weeks, before stepping dose up again , depending on test results

But likely the most affective things as well will be to change to strictly gluten free diet

Good probiotic may help gut heal too and increase good gut bacteria

Bone broth and fermented foods like kefir are good too

Read as much as possible about Hashimoto's

See The Thyroid Pharmacist website plus her video series the Thyroid Secret

Amy Myers, Chris Kresser, DrKnews.com. Scdlifestyle.com

Elven profile image
Elven

Oh Selina, you poor thing! That doctor hasn't got a clue. What a huge and damaging reduction in levo. You must be suffering badly.

If he remains adamant that he is right you need to see another doc at your practice or change doctors. I feel so bad for you. Good luck in finding someone who knows what they're about. You can't go on like this! Bless xx

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