Hashimoto's: I have Hashimoto’s. I have been on T... - Thyroid UK

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Hashimoto's

Ellie8 profile image
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I have Hashimoto’s. I have been on T4 for over a year. I am currently on 100mcg for the T4 and10mcg for the T3 but I have quite a few problems that I don’t know what to do about.

Low ferritin - Iron deficiency?

I have been told I am iron deficient because of my low ferritin and given ferrous fumarate but I have been told my red blood cell count is normal and can’t be iron deficiency. I haven’t taken the iron in a very long time because it upsets my stomach and makes me sick even when orange juice is added to it as per the patient instruction leaflet (PIL). I have been trying to increase my iron through my diet by eating lots more meat and iron rich veggies such as kale and spinach instead and it has increased a bit but not sure why.

Vitamin D

I have had vitamin D tablets prescribed for me but I have not had my levels checked for about 9 months. For some reason I have been told it will be checked in January. I was taking a 3000IU supplement because I looked at the upper tolerable limit for this but I decided to double the dose to get my levels up more. My doctor was impressed that my vitamin D levels went up 12 points within 3 months (when I was just taking the 3000IU once a day) and she said the vitamin D they prescribed must be doing me a lot of good. It was then that I told my doctor I was on a stronger supplement and she said she didn’t like me taking something stronger and she wanted me to revert back to the ones she prescribed.

My vitamin D levels have improved a lot before on the one I bought and I feel a lot brighter but after doubling the dose I had a few digestive problems after taking. I have read that it could be related to low magnesium but my magnesium looks fine as back in Feb it was mid-range. I have got a supplement for magnesium because I had low magnesium symptoms before and I didn’t see the harm in increasing my levels of this. It is a transdermal spray but I haven’t told the doctors I have used this!

Vitamin B12

I supplemented B12 (methylcobalamin) on the advice of my endo but my levels didn’t increase on this and so I discontinued the supplement. Since my diet has improved (I eat a lot of fish and meat) the B12 levels look like they have gone up on their own. Would this be from what was left over from the supplement and that I shouldn’t have discontinued it? Should I be relying on the supplement anymore as I still have this?

Addison’s/low adrenal reserve/adrenal insufficiency signs and symptoms - but high cortisol levels?

My endo was very sure I had Addison’s/adrenal insufficiency/low adrenal reserve because of hyper pigmentation on my back and legs and because I was extremely slim. She checked my blood pressure when I stood up from sitting and because that was normal she did not check my adrenal function any further. So I did a private adrenal stress test which has said my cortisol was increased in 2 of my samples and could indicate obesity (which I am not - my body mass index is something like 18.5!), Cushing’s (not sure) or that I am using glucocorticosteroids (which I am not)

Going gluten free

In April I went to an appointment at my new practice and saw a doctor who said I have Hashimoto’s because of the raised antibodies. He asked me if I eliminated gluten from my diet. I said yes because my endo in November 2014 said I ought to and I had done this for about 5 months. He said cutting out gluten should have sorted out the antibodies and since cutting out gluten made no difference to them I may as well reintroduce it.

Current problems:

Ongoing symptoms suggestive of under active - bone pain, constipation, heavy periods, irregular ovulation, irregular periods, feeling cold, puffy eyes, pale skin, goitre (doctor, endo and ultrasound department all know about the goitre), blood rushes, forgetfulness, tired

Symptoms when taking iron supplement - nausea, unsettled stomach, vomiting

Symptoms when taking vitamin D 3000IU x2 - gurgling stomach, diarrhoea, watery gas (sorry for TMI!), nausea, being sick

Symptoms when eating gluten - gurgling stomach, gas, nausea, constipation (I get the symptoms soon after eating gluten but doctor has said this doesn’t constitute gluten sensitivity and they won’t run a celiac profile)

Results with anything significant during those times are below.

Nov-15 (vitamins and minerals)

Serum ferritin - 23ug/mL (15-150) - I think this increased through diet?

Serum B12 - 497ng/mL (190-900) - I think this increased through diet/leftover from the supplement?

Serum folate - 5.1ug/mL (4.6-18.7)

(Not gluten free)

Oct-15 (thyroid function tests)

Serum TSH - 0.01mIU/L (0.27-4.20)

Serum free T4 - 21.4pmol/L (12-22)

Serum free T3 - 4.2pmol/L (3.9-6.7)

(T4 dose - 100mcg. T3 dose - 10mcg)

(Not gluten free)

Sep-15 (private adrenal stress test)

Cortisol sample 1 - 14.81nmol/L (7.45-32.56)

Cortisol sample 2 - 19.31nmol/L (2.76-11.31)

Cortisol sample 3 - 5.21nmol/L (1.38-7.45)

Cortisol sample 4 - 7.61nmol/L (0.83-3.86)

Sum of cortisol - 46.9nmol/L

DHEA sample 1- 0.44nmol/L (0.25-2.22)

DHEA sample 3 0.32nmol/L (0.25-2.22)

DHEA mean - 0.34nmol/L

DHEA : cortisol ratio - 0.035nmol/L (0.015-0.150)

(T4 dose - 100mcg, T3 dose - 10mcg)

(Not gluten free)

.

Aug-15

Serum TSH - 0.06mIU/L (0.27-4.20)

Serum free T4 - 24.3pmol/L (12-22)

Serum free T3 - 4.1pmol/L (3.9-6.7)

(T4 dose - 175mcg before results given. T3 dose - 10mcg after results given. Taking vitamin D 3000IU x2 but only for 2 days so I stopped it because of digestive symptoms and when I stopped it the digestive symptoms went away?)

(Endo said my ferritin could be better but back in March it was in range. Given T3 because endo said T3 looked awful and was not improving despite me being on a high dose of T4)

(Not gluten free)

Jun-15

Serum TSH - 2.6mIU/L (0.27-4.20)

Serum free T4 - 17.3pmol/L (12-22)

Serum free T3 - 4.3pmol/L (3.9-6.7)

(T4 dose - 150mcg after results given, taking vitamin D 3000IU once a day)

(Not gluten free)

Apr-15 - run by new practice. Hashimoto’s diagnosis given by new doctor

Serum TSH - 3.8mIU/L (0.27-4.20

Serum free T4 - 12.5pmol/L (12-22)

Serum free T3 - 4pmol/L (3.9-6.7)

Thyroid peroxidase antibody - 371kIU/L (<34)

Thyroglobulin antibody - 563.5kIU/L (<115)

(T4 dose - 125mcg after results given, taking vitamin D 3000IU once a day)

(Still gluten free until doctor said I may as well reintroduce it)

Mar-15

Serum ferritin - 16ug/mL (15-150)

25-OH Hydroxyvitamin D2 - <6.0

25-OH Hydroxyvitamin D3 - 67.3nmol/L (>75)

Total vitamin D - 57.3nmol/L

(Taking vitamin D 3000IU once a day, stopped taking B12 12000mcg because levels went down to 338 in Feb from 374 in Nov for unknown reason)

(Still gluten free)

Feb-15

Serum TSH - 0.69mIU/L (0.27-4.20)

Serum free T4 - 15.3pmol/L (12-22)

Serum free T3 - 4.3pmol/L (3.9-6.7)

Serum ferritin - 16ug/mL (30-400)

Serum B12 - 338ng/mL (190-900)

Serum folate - 7.4ug/mL (4.6-18.7)

Serum zinc - 15ug/mL (11-23)

Serum magnesium - 0.85nmol/L (0.70-1.00)

Serum selenium - 0.96umol/L (0.89-1.65)

(Still taking 100mcg T4. Still taking1200mcg B12 supplement and still taking 3000IU vitamin D once a day)

(Still gluten free)

Nov-14 - run by practice for endocrine referral

Serum TSH - 51mIU/L (0.27-4.20)

Serum free T4 - 11.5pmol/L (12-22)

Serum free T3 - 4.2pmol/L (3.9-6.7)

Thyroid peroxidase antibody - 134kIU/L (<34)

Serum ferritin - 14ug/mL (15-150)

Serum B12 - 374ng/mL (190-900)

Serum folate - 3.7ug/mL (4.6-18.7)

25-OH Hydroxyvitamin D2 - <6.0

25-OH Hydroxyvitamin D3 - 45.3nmol/L (>75)

Total vitamin D - 45.3nmol/L

(T4 started by doctor - 50mcg, then increased to 75mcg 3 weeks after, then to 100mcg 3 weeks after that, given ferrous fumarate but it upset my stomach and made me sick even when adding orange juice to it so I gave up and tried to increase iron with more veggies)

(First endo said my ferritin, vitamin D, B12 and folate could all be better and recommended I cut out gluten)

(Went gluten free after the endo appointment and ordered the vitamin D 3000IU and took that once a day. Ordered the B12 supplement and took that once a day. Begun using the 2 supplements as soon as I received them through post)

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Ellie8
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Clutter profile image
Clutter

Welcome to the forum, Ellie8.

TSH is suppressed, FT4 high in range, and FT3 low in range. This indicates poor T4 to T3 conversion and you may feel better if Levothyroxine (T4) dose is reduced by 25mcg and T3 dose increased to 20mcg.

Good levels of iron and vitamin D aid absorption of thyroid meds and conversion of T4 to T3.

You might try gentler iron supplements like Gentle Iron or Spatone to raise ferritin. 23 is very low, ferritin is optimal >100 through to half way through range. Take iron with 500-1,000mg vitamin C to aid absorption and minimise constipation. Iron should be taken 4 hours away from Levothyroxine (T4) and T3.

Cooking with the Cambodian Iron Fish can also raise iron levels healthunlocked.com/thyroidu....

Vit D is replete 75-200. Most people are comfortable around 100. I don't know why your GP had a problem with you increasing dose and I would increase it again until vitD is replete. Take vitD 4 hours away from T4 and T3.

B12 is optimal at 1,000. I would continue 1,000 - 1,200mcg methylcobalamin as a maintenance dose and take a B Complex vitamin to improve folate and keep the other B vits balanced.

_______________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

Ellie8 profile image
Ellie8 in reply toClutter

Thank you Clutter.

The doctor says the vitamin D I took was a toxic dose.

I will continue to take the B12 supplement and try to look for a gentler iron supplement.

I have had my latest thyroid results back via post - endo and doctor did not call me about them even though they are abnormal.

Serum TSH - 0.02mIU/L (0.27-4.20)

Serum free T4 - 20.0pmol/L (12.0-22.0)

Serum free T3 - 5.0pmol/L (3.9-6.7)

The endo wants me to reduce my T3 to 5mcg and keep the 100mcg T4?

Clutter profile image
Clutter in reply toEllie8

Ellie8, Well I can't agree that 6,000iu is a toxic dose. I was prescribed 40,000iu D3 for 14 days to boost my vitD <10, followed by 2,000iu x 8 weeks. VitD was then 107. Possible toxicity would have been >250.

It looks as though your endo doesn't like suppressed TSH. I can't see any other reason to reduce your T3 dose. FT4 and FT3 are both within range so you aren't overmedicated. Read Treatment Options in thyroiduk.org.uk/tuk/about_... and tiredthyroid.com/tsh.html

________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

Ellie8 profile image
Ellie8 in reply toClutter

Thank you for this Clutter. Is it possible my doctor doesn't like me taking anything other than that on the NHS? The vitamin D I bought was from Holland and Barrett.

I will look at the links you helpfully provided. :)

Clutter profile image
Clutter in reply toEllie8

Ellie8, it appears to be the D3 dose you were taking that your GP didn't like.

Clutter profile image
Clutter

ps Ellie8, It's a pity gluten-free didn't reduce Hashimoto's antibodies, but digestive symptoms of gurgling stomach, gas, nausea, and constipation suggest you do appear to have sensitivity to gluten, even though you may not be gluten intolerant, or have coeliac disease. If you were more comfortable g-f you should adopt it again.

_______________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

Ellie8 profile image
Ellie8 in reply toClutter

Thank you Clutter. I didn't mind going gluten free so I will adopt it again.

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