Symptoms thyroid? Advice please: I am new, I am... - Thyroid UK

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Symptoms thyroid? Advice please

Kai6 profile image
Kai6
28 Replies

I am new, I am wondering if my symptoms are continuing hypothyroid ones?

Cold all the time, flaking nails, hair loss, puffy eyes, constipation, tiredness, weight gain, heavy periods. Taking 50mcg Levo reduced from 150mcg diagnosed 2013. Thanks

TSH 6.2 (0.2 - 4.2)

Free T4 13.8 (12 - 22)

Free T3 3.1 (3.1 - 6.8)

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Kai6
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28 Replies
SeasideSusie profile image
SeasideSusieRemembering

Kai6

You are undermedicated. Can you fill in the gaps please?

Why has your dose of Levo been reduced?

Was it reduced from 150 to 50mcg in one go?

Have you had thyroid antibodies tested - were they high - do you have Hashimoto's?

Have you had vitamins and minerals tested, if so post the results and say if you are supplementing, with what dose and for how long/

Post any other test results with dose you were taking at the time, and if dose changed as a result say why.

If you give as much information as possible we can help. Your post is the same as so many we've had lately but we can't guess at the problem even though we think we know what it is.

Kai6 profile image
Kai6 in reply to SeasideSusie

Yes endo reduced me to 50mcg from 150mcg based on TSH 1.60 (0.2 - 4.2) Free T4 16.2 (12 - 22) Free T3 3.2 (3.1 - 6.8)

Thyroid peroxidase antibody 875 (<34)

Thyroglobulin antibody >1500 (<115)

thanks

SeasideSusie profile image
SeasideSusieRemembering in reply to Kai6

Kai6

TSH 1.60 (0.2 - 4.2) Free T4 16.2 (12 - 22) Free T3 3.2 (3.1 - 6.8)

To reduce your dose from 150 to 50mcg based on those results makes no sense at all. You were undermedicated and needed a lower TSH and higher free Ts.

Did he say why he reduced your dose?

You need a new endo, one who knows how to treat hypothyroidism.

Has your GP had anything to say?

Kai6 profile image
Kai6 in reply to SeasideSusie

He reduced it saying he didn't want to run the risk of my TSH going over range so reduced it instead of increasing it thanks

SeasideSusie profile image
SeasideSusieRemembering in reply to Kai6

Kai6

If he did actually say that then he doesn't know what he is talking about and you should run away from this endo very quickly.

TSH is the one that should be kept low and reducing Levo will increase TSH, increasing Levo will reduce TSH.

Maybe you misheard?

Clutter has covered your vitamins and minerals. The only thing I would add is

1) You can increase ferritin by eating liver regularly (maximum 200g per week) and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...

2) 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.

Kai6 profile image
Kai6 in reply to SeasideSusie

Thanks no that was what he said

SeasideSusie profile image
SeasideSusieRemembering in reply to Kai6

Oh lordy, heaven help the rest of his patients. Seriously, he doesn't know what he's talking about. If you really want to see an endo, your best bet is to email dionne.fulcher@thyroiduk.org for the list of thyroid friendly endos, then ask on the forum for feedback on any who you can get to.

If you GP is supportive and knows how to treat hypothyroidism, maybe you don't even need an endo.

**

Thyroid peroxidase antibody 875 (<34)

Thyroglobulin antibody >1500 (<115)

I can't see that this has been addressed in any of the other replies.

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. 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 which is very likely what has happened to you.

The absorption/gut problems need to be addressed so that any supplements you take can be absorbed to improve your nutrient levels. Thyroid hormone can only work when nutrient levels are optimal. See SlowDragon 's reply to this post for information and links to help.

healthunlocked.com/thyroidu...

Clutter profile image
Clutter

Kai6,

You are undermedicated to have TSH 6.2. Was your dose reduced from 150mcg to 50mcg in one fell swoop?

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.

Hypothyroid patients are prone to ferritin, vitamin D, B12 and folate deficiency so ask your GP to check them. Heavy periods are often due to low iron/ferritin.

Kai6 profile image
Kai6 in reply to Clutter

Yes endo reduced me to 50mcg from 150mcg based on TSH 1.60 (0.2 - 4.2) Free T4 16.2 (12 - 22) Free T3 3.2 (3.1 - 6.8) thanks

Clutter profile image
Clutter in reply to Kai6

Kai6,

That's insane. TSH 1.60 indicates undermedication not overmedication, and FT4 was less than halfway through range with very low FT3.

Was endo a trainee or consultant? How old was s/he?

Kai6 profile image
Kai6 in reply to Clutter

He was a consultant and he was very old

Kell-E profile image
Kell-E in reply to Kai6

Like so old he's totally lost it???

Clutter profile image
Clutter in reply to Kell-E

Scottbnk,

Lol! I've started asking about age to try and determine whether doctors are young ie inexperienced, or older so experienced. Two pretty awful treatment decisions recently have been by older, so presumably experienced, endos :x

Kell-E profile image
Kell-E in reply to Clutter

I'm not sure which is worse, experienced or inexperienced. I honestly think I'd want an inexperienced one, maybe then at least you could teach them something? lol

Kai6 profile image
Kai6 in reply to Clutter

Ferritin 22 (30 - 400)

Folate 1.3 (4.6 - 18.7)

Vitamin B12 144 (180 - 900)

Vitamin D 14.5 (<25 severe)

Taking 800iu D3 and been taking ferrous fumarate 3x since 2014 thanks

Clutter profile image
Clutter in reply to Kai6

Kai6,

Did your GP or endo order these tests and were they done recently or in 2014?

Kai6 profile image
Kai6 in reply to Clutter

GP ordered these tests and they were taken November 2017

Clutter profile image
Clutter in reply to Kai6

Kai6,

And has GP prescribed anything for you?

Kai6 profile image
Kai6 in reply to Clutter

No

Clutter profile image
Clutter in reply to Kai6

Kai6,

You should consider making a written complaint to the practice manager that you were not offered treatment for severe vitamin and mineral deficiencies in November.

Ferritin is deficient and this may indicate iron deficiency anaemia. Your GP should do an iron panel and full blood count to check. Usual treatment for iron deficiency anaemia is 3 x 210mg Ferrous Fumarate or an iron infusion. If you are prescribed iron tablets take each with 1,000mg vitamin C to aid absorption and minimise constipation. Iron must be taken 4 hours away from Levothyroxine.

Vitamin D is severely deficient. Your GP should refer to local guidelines or the NICE CKS recommendations for treating vitamin D deficient adults cks.nice.org.uk/vitamin-d-d... Do NOT accept a prescription for 800iu D3. That dose is prescribed as a maintenance dose once vitD is >75. My GP prescribed 40,000iu daily x 14 followed by 2,000iu daily x 8 weeks which raised vitD from <10 to 107. Vitamin D should be taken 4 hours away from Levothyroxine.

B12 and folate are deficient. Your GP should initiate B12 injections ASAP and 48 hours in advance of you being prescribed 5mg folic acid for the folate deficiency. Investigation should also be done to see whether pernicious anaemia is causing B12 and folate deficiency. Signs and symptoms of deficiency are listed in b12deficiency.info/signs-an... healthunlocked.com/pasoc are the experts on PA, B12 and folate if you need further advice or help.

You also need a Levothyroxine dose increase. If your GP won't increase dose because you are under the care of the endo GP should contact the endo for permission.

Kai6 profile image
Kai6 in reply to Clutter

I am iron deficient and these levels have been low since starting ferrous fumarate 3x and vitamin D 800iu thanks

Clutter profile image
Clutter in reply to Kai6

Kai6,

Why didn't you say that when I asked whether you had been prescribed anything?

As I said above, 800iu is wholly inadequate to treat vitD deficiency. My vitD deficiency was sorted in 10 weeks.

If you are still iron deficient after 3 years treating with FF your GP should refer you to a gastroenterologist or haematologist to see why you are not absorbing iron.

Kai6 profile image
Kai6 in reply to Clutter

I put comments below saying I am taking ferrous fumarate 3x and vit D3 800iu but haven't been prescribed anything recently sorry

Clutter profile image
Clutter in reply to Kai6

Kai6,

I don't understand. Aren't you taking the iron and vitD every day?

Kai6 profile image
Kai6 in reply to Clutter

Yes

Clutter profile image
Clutter in reply to Kai6

Kai6,

Then my advice is to ask GP to refer you as I said above, to increase your vitamin D dose to a loading dose, and make sure you get B12 injections and folic acid.

Kai6 profile image
Kai6

He reduced it saying he didn't want to run the risk of my TSH going over range so reduced it instead of increasing it thanks

SlowDragon profile image
SlowDragonAdministrator in reply to Kai6

Exactly. Endo obviously totally incompetent. You needed a dose INCREASE of 25mcg

Not a reduction of 100mcg.

You need a new endo.

Email Thyroid UK for list of recommended thyroid specialists dionne.fulcher@thyroidUK.org

Your GP is also seriously negligent to not address your vitamin deficiencies

Is there another GP you can see?

How long have you been on reduced dose ?

You will need to step Levo dose back up, but due to being severely under medicated your vitamins are now dire

So you may need to step Levo dose back up slowly. You could try increasing to 100mcg, but increase to 75mcg may be easier to tolerate. Wait 6-8 weeks, retest and then increase further 25mcg.

Repeat until TSH is around one and FT4 towards top of range and FT3 at least half way through range

You have Hashimoto's so really need to consider trying strictly gluten free diet, you don't need any gut symptoms

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...

Come back with new post to let us know what action & father trsts new GP as taken and vitamins prescribed

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