Thyroid UK
90,632 members105,008 posts

Continuing hypothyroid symptoms?

Hi

I am new, is it possible I might need a higher dose since my 175mcg Levothyroxine hasn't really helped with my symptoms? I have the following below:

Hard stool

Puffy eyes

Tiredness

Pins and needles

Hair loss

Weight gain

Depression

Muscle pain

Feeling cold

Sweats

Dizziness

Tinnitus

Diagnosed 2012

Thanks

OCT-17

Serum TSH 6.7 (0.2 - 4.2 mIU/L)

Serum free T4 13.7 (12 - 22 pmol/L)

Serum free T3 2.5 (3.1 - 6.8 pmol/L)

25 Replies
oldestnewest

Do you have the results of any vitamin and mineral blood tests that you can share, along with their reference ranges, please?

Yes, at a cold read, your results suggest that you're undermedicated. However, without vitamin and mineral levels being in an optimal range (not just within the reference range), it's difficult to know if you are just not making effective use of the supplemented T4 because you have multiple deficiencies.

Otherwise, it seems that you might need a referral to an endocrinologist who will investigate why your FT4 and FT3 are so low (the latter below the range) and will take a hard look at whether you might benefit from some T3 (difficult in the current climate).

First thing, however, it would be useful to see your vitamins and minerals to see if members might have helpful suggestions.

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Hi and thanks, my endo doesn't want to see me for another year

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Any vitamin and mineral test results to share?

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Ferritin 37 (30 - 400 ng/L)

Folate 1.8 (2.5 - 19.5 ng/L)

Vitamin B12 183 (180 - 900 pg/L)

Vitamin D total 25 OH 26.3

(<25 nmol/L severe vitamin D deficiency

25 - 50 vitamin D deficiency

50 - 75 vitamin D suboptimal

>75 adequate)

Taking 800iu vitamin D and 210mg ferrous fumarate 3 times a day

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How long have you been taking the supplements as your levels are poor enough that they may well be influencing the effectiveness of the levo.

Is that 2400IU of vitamin D a day, or just the 800IU? If it's the latter, 800IU is the maintenance dosage for someone who has corrected a deficiency, not the corrective dosage. Your vitamin D level should qualify you for loading doses of it.

Are you being investigated for your B12 level which is barely into the reference range but is ??? because of your low folate level (there's a substantial crossover with iron, folate, and B12 deficiencies)? It looks like you might also have folate deficiency/ anaemia but you should be investigated for the B12 before taking folic acid to address the folate level.

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Ferrous fumarate 3 times a day since 2013

Folic acid since 2016

Vitamin D 800iu per day since 2013

Not being investigated for B12 level

Thanks

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You need more effective interventions as you've been supplementing for some time and your levels aren't improving.

Please read SeasideSusie's advice to someone with similar numbers (scroll down): healthunlocked.com/thyroidu...

She quotes various guidelines and protocols that it would be helpful to jot down so you can discuss them with the most competent GP in your practice. Your B12 is now low enough that with the sustained folate deficiency/anaemia, it should be evaluated.

B12 investigations should rule out Coeliac's Disease, H Pylori, as well as Intrinsic Factor etc.

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Tokka,

You need to contact your endo and ask for a dose increase as you are undermedicated to have TSH >6 on 17mcg. 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 endo.

Is your GP treating low B12 and deficient folate?

800iu is totally insufficient to treat vitD 26. 800iu is a maintenance dose to be used once vitD is replete ie >75. You need 10,000iu D3 daily loading dose for 6 weeks then reduce to 5,000iu. You can buy 5,000iu doses on Amazon if your GP won't prescribe. If you buy on Amazon please use the affiliate link healthunlocked.com/thyroidu...

Taking 1,000mg vitamin C with each Ferrous Fumarate tablet will aid absorption and minimise constipation.

Iron and vitamin D should be taken 4 hours away from Levothyroxine.

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Thanks GP is not treating low folate saying it is only a few points under range and B12 was classed as normal no action

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So, has your GP stopped the folic acid supplement that was treating the folate deficiency?

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Yes

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Tokka,

Your folate is deficient. Folate and B12 work in tandem. My GP prescribed 5mg folic acid to correct folate deficiency.

B12 is desperately low. If you have symptoms in b12deficiency.info/signs-an... go to healthunlocked.com/pasoc for advice on how to tackle your GP about low B12 and folate deficiency.

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Tokka

My suggestion

Folate 1.8 (2.5 - 19.5 ng/L)

"Good morning Doctor.

I understood ranges are for a purpose. Can you please tell me why there are ranges if you're going to ignore them?"

Folate should be at least half way through it's range and as it works together with B12 I imagine it's pretty important to be in range.

**

Vitamin B12 183 (180 - 900 pg/L)

Do you have any signs of B12 deficiency b12deficiency.info/signs-an...

This is something your GP should have checked with such a low level, together with your folate deficiency.

I would pop over to the Pernicious Anaemia Society forum for further advice. Quoe your B12/folate/ferritin results and as you're taking 3 x ferrous fumarate daily I imagine you've been diagnosed with iron deficiency anaemia and you should mention this as well, along with any signs of B12 deficiency you are experiencing.

healthunlocked.com/pasoc

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Vitamin D total 25 OH 26.3

You need loading doses, ask for them - see NICE treatment summary for Vit D deficiency:

cks.nice.org.uk/vitamin-d-d...

"Treat for Vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 nmol/L.

For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU] given either as weekly or daily split doses, followed by lifelong maintenace treatment of about 800 IU a day. Higher doses of up to 2000IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders. Several treatment regims are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."

Each Health Authority has their own guidelines but they will be very similar. Go and see your GP and ask that he treats you according to the guidelines and prescribes the loading doses. Once these have been completed you will need a reduced amount (more than 800iu so post your new result as the time for members to suggest a dose) to bring your level up to what's recommended by the Vit D Council - which is 100-150nmol/L - and then you'll need a maintenance dose which may be 2000iu 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/

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.

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Ferritin 37 (30 - 400 ng/L)

You can help raise 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...

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Have you had thyroid antibodies tested? With such poor nutrient levels I wouldn't be suprised if they are high and confirm autoimmune thyroiditis aka Hashimoto's.

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Thanks antibodies are

TPO antibody 603.5 (<34)

TG antibody 720.3 (<115)

They were done privately

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Tokka

TPO antibody 603.5 (<34)

TG antibody 720.3 (<115)

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 attach little or no importance to antibodies but don't understand what Hashi's can do. So you need to read, learn and 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_...

Your Hashi's is behind your problems here. Hashi's causes gut/absorption problems which leads to low nutrient levels or deficiencies. Thyroid hormone can't work unless nutrients are optimal. So you need to address the absorption problem as well as the Hashi's as mentioned above.

Check out SlowDragon's reply to this post for information on how to address the absorption problem healthunlocked.com/thyroidu...

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You need an immediate increase in levothyroxine if you've not had one within the last four weeks. Your TSH has to come down to 1 or lower. Not higher. Both fT4 and FT3 have to be towards the upper part of the range.

For someone who has been diagnosed five years it is disgraceful that doctors are useless where you are concerned.

You should be on an optimum dose of levothyroxine with no clinical symptoms at all.

thyroiduk.org.uk/tuk/about_...

Your aim is a TSH of 1 or lower with FT4 and FT3 towards the upper part of the range. Your doctors should also test B12, Vit D, iron, ferritin and folate. Everything has to be optimal.

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How do you take your levo? How long to you leave between your levo and your iron supplements?

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Levo is taken on an empty stomach with just water and I leave at least 4 hours between the dose and food, coffee,tea, supplements

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Well, that should be good. However, your results don't reflect your dose, so you do have an absorption problem somewhere. Do you have low stomach acid? Or gut problems?

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I think I have gut problems - my stomach is quite sensitive depending on what I eat

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Well, I wasn't thinking about stomach sensitivity, but it could be that you have low stomach acid, making digestion difficult, which is why your stomach appears to be sensitive.

I was thinking more of leaky gut, Coeliac, etc.

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Yes I have coeliac

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So, are you 100% gluten-free?

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I try to exclude gluten where I see it on labels, that's really the only thing I do at the moment

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Well, you'll probably feel better if you cut it out completely, although I know it's not easy. And, healing your gut will make for better absorption of your levo. So, that's something to work on - that and your stomach acid. :)

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