Newbie here -- Question on dosage and feeling better

[Ninajado1988]

Hi all -- I am new to all of this, and would like to know your thoughts on if a higher dose of Levo would make me feel better. Or is it a matter of getting vitamin levels stable to feel better?

Here's my background:

I have been unwell for several years with weight gain, brain fog, dizzy so bad it's hard to drive, thinning hair and two frozen shoulders (on different sides). GP tested me in Mar-2015 and my TSH was 4.26. The lab result said it was normal. No other tests were done and my GP told me I was fine and most likely just stressed or menopausal. I was put on Duavee (HRT). It helped some with the thinning hair and brain fog.

I changed GP's and was given a full physical with blood work and my results in March 2018:

TSH: 4.62 -- Range of .45 - 4.5

T3: 159 -- Range of 71 - 180

Magnesium: 2.2 -- Range of 1.6 - 2.3

Vit B12: 298 -- Range of 232 - 1245

Vit D: 7.8 -- Range of 30 - 100

TIBC: 369 -- Range of 250 - 450

Iron, Serum: 54 -- Range of 27 - 159

Iron, Saturation: 15% -- Range of 15% - 55%

Folate: >20 -- Range of >3.0

GP put me on:

50MCG Levo -- always take in the A.M. first thing - no food or coffee for 1 hour.

50,000 IU Vit D2 - once per week

B12 - 4,000 MCG sublingual Daily

Also, still on Duavee (HRT)

Had blood work retested in May 2018 and the results are:

TSH: 1.36 -- Range of .45 - 4.5

T4, Free(Direct): 1.33 -- Range of .82 - 1.77

Vit D: 33.9 -- Range of 30 - 100

B12: Dr ordered this but lab forgot to test

GP didn't change my meds at this visit -- I told her I was still tired, sleeping way too much and still was having trouble driving due to dizziness. She asked if I wanted to increase my Levo, but being new to all of this, I told her I would do what she thought was best -- so she decided to keep everything the same for now and to re-do bloodwork and re-evaluate my meds in Oct 2018.

I am now rethinking my answer and think I may need to have my dosage increased. Any thoughts on this? I have the lab work slip and can go get my labs done and visit again before Oct 2018 if I want to.

Also, I am confused on the difference between Hypo, Hashimoto's and Celiac -- are there different treatments?

Thanks so much for your input!

[Nanaedake]

Your vitamin D level was extremely low in March at 7, is this the correct result and not a typo? Was there no retest to find out whether level has increased? With these deficiencies your doctor should be looking into absorption issues. Tests for coeliac disease are separate from thyroid disease and the blood tests are not very accurate I believe. To fully investigate requires referral to a gastroenterologist. You need to find out if the supplements are increasing your vitamin D and B12 levels to exclude these as a cause of tiredness.

[Ninajado1988 in reply to Nanaedake]

Hi Nanaedake,

Thanks for your reply.

The Vit D at 7.8 is correct -- when I had the bloodwork done again in May it was 33.9. It's still low but is climbing some. I am still taking the 50,000iu of Vit D weekly.

[Nanaedake in reply to Ninajado1988]

Your vitamin D was still low in May as it's only slightly above the range you've given. Generally on this forum it's advised to have vitamin D at mid lab range. The Vitamin D Council website has lots of good information on vitamin D.

Generally, Dr's treat people who are hypothyroid the same whether they have autoimmune thyroid disease, a failing thyroid, or thyroid surgery... but on this forum there is advice specifically aimed at people with Hashimotos (called autoimmune thyroiditis by Dr's). SlowDragon has good links, see below but you need antibodies testing to find out if you have Hashimotos.

[SlowDragon Administrator in reply to Ninajado1988]

Is this 7.8 nmol? if so this is extremely low

[Ninajado1988 in reply to SlowDragon]

The Vit D is in ng/mL -- and yes, it is really low. The lab's range is 30 - 100. The results after being on 50,000 iu weekly for a few months is 33.9 ng/mL which is within range but still low

[SeasideSusie Remembering in reply to Ninajado1988]

Nina

The Vit D Council recommends a level of 40-60 ng/ml. It would be a good idea to continue with your current 50,000iu a week until you get near the top of that range then reduce to a maintenance dose, which may be 2000iu daily, maybe more or less, maybe more in winter than summer, it's trial and error so we need to retest twice a year to make sure we keep within the range.

Do you take your D3 once a week? I've seen it said that taking a daily amount is more effective.

Are you taking D3 with the fattiest meal of the day or some dietary fat, it is fat soluble so needs fat to be absorbed.

Are you taking D3's important cofactors 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 tissue where it can be deposited and cause problems such as kidney stones and calcification of arteries. Magnesium helps the body use D3.

[SlowDragon Administrator]

Do you have Hashimoto's also called autoimmune thyroid disease diagnosed by high thyroid antibodies

Have you had TPO and TG thyroid antibodies tested? If not you need them tested

Vitamin D - is this measured in nmol or ng/ml ?

Are you based in UK or another country (this will vary Vitamin-D units of measurement

You need folate, ferritin and B12 tested

Would be extremely good idea to do blood test for coeliac

Assuming you are in the UK , Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting.

If on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If 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. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

If you have do have Hashimoto's Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

[Ninajado1988 in reply to SlowDragon]

Hi Slow Dragon,

Thank you for all the good information and links to research!

To answer your questions:

* I don't know why my I am hypo -- my GP didn't explain the diagnosis well. I didn't understand it enough to ask at my appointments and only now after reading on this forum wonder why my thyroid isn't working. I will take your advice and get the tests you listed. I figure I can only increase my well-being by knowing what is going on.

* The Vit D is in measured in ng/mL.

* I am from the US, but a great deal of my ancestors comes from the UK.

I believe my GP will order the tests you mentioned, but if not, I will do them privately.

When I was dealing with the frozen shoulders, my orthopedic doctor kept asking if I had an auto-immune disease, but the TSH test came in within range back in 2015 -- Although it was near the top of the range. Are you familiar with frozen shoulder presenting with Hashimoto's?

Thanks again for your reply!

[Nanaedake in reply to Ninajado1988]

I do know people who have had shoulder problems and subsequently found out they had thyroid disease. I had shoulder and neck pain leading up to diagnosis. I didn't have surgery for it though.

[McPammy]

Hi. I too was suffering from severe tiredness. I also have had x2 frozen shoulders in both. My thyroid results were in the normal range. However, I got my cortisol checked and this was far too low at 68. I’ve since been in hospital twice within a month. Maybe you could get your cortisol checked if not already. Sometimes thyroid conditions lead to cortisol issues. Your cortisol is very important. They do 9am bloods only in the YK but you need at least morning and late afternoon to know how your personal daily curve is going.

Hope this helps.

[eeng]

50mcg a day of Levothyroxine is a starter dose. It is normal for the dose to be raised every 8 weeks after a blood test until you start to feel better. Dizziness is a symptom of hypothyroidism, so I would say you need to be taking at least 75mcg a day. If you have thyroid antibodies then you will need a slowly increasing dose over the years as your thyroid is gradually incapacitiated.

Have you had your ferritin levels checked? I see your iron saturation level is right at the bottom of the range. People with hypothyroidism are often low on ferritin (stored iron) and find that they can make much better use of their thyroid medication once their ferritin level is around 70 (mid range).

Your doctor is doing the right thing in giving you high strength Vitamin D and retesting regularly. It is also good that you are taking B12 (you can't overdose on B12). Many doctors just ignore these deficiencies, or else prescribe tiny amounts, so she is doing quite well.

[Roadrunnergreg]

Ok your D2 I'm sure you meant D3, seeing how low it is, when mine was low 27, the doctor put me on 25 000iu a day for two months to get it up to 60, so I'd say that needs increasing to 4x a week. This is most likely the cause of the dizziness, I was walking round as if I was drunk.

Your B12 needs to get at the top of the range, also you need to take a B Complex too, as they work together. This also suggests your low in stomach acid as their not being broken down and absorbed, if this is he case you need a BetaineHCL with Pepsi supplement, and no doubt a probiotic supplement too.

I didnt see FT3 tested, TSH and FT4 look about right, also if you've got a thyroid problem you've got an adrenal problem too. Hypothyroidism suggests low Zinc, low Zinc suggests high cortisol. Balance the Zinc and the thyroid should autocorrect. The adrenals need BCAA's and Vit C too at least for a couple of months... This is how I reversed my hypothyroidism and adrenal fatigue...

[Ninajado1988 in reply to Roadrunnergreg]

Hi Roadrunnergreg,

I am actually taking Vitamin D2 -- not D3 -- my GP gave me a prescription. Is there a difference between the D2 and D3?

[Roadrunnergreg in reply to Ninajado1988]

Oh yes there's a difference, what did he test for, this D3 is what they usually check on. D2 is plant derived does convert but at a much slower rate, and ceasing D2 supplementation can/dies lead to a vitamin D deficiency quicker. Vitamin D3 is the usual form taken... Hope that helps

[Highland49]

Hi,

Just to bear in mind that if you have absorption problems, you will not be able to absorb much of your b12, even if sublingual.

Unfortunately, other tests for pernicious anaemia will now be skewed due to the b12 supplements.

Blood serum tests will now not show the accurate level, again due to taking the b12. Once you start treatment for b12, the only way of knowing that it is helping is by how you feel. Dizziness can also be caused by low b12.

It's very common to have b12 deficiency along with under active thyroid.