Dosing problems

Hi, i wrote a while back about my daughter being over medicated on 50 mg of levothyroxin with a TSH 0.05 (0.51-4.3) and T4 27.4 (12.6-21). The doctor told me to then give her 25 mg one day and 50 the next to see how that went. I just got results back and her FT4 is 15 and TSH is 7.45. These results are worse than when she was only on 25mg a day when her TSH was 4.1. The doctor says this maybe showing that we shouldn't have started treating her yet, I did push him to start her on levo back in June this year when her TSH reached 10 and because of her symptoms. Her results did go up and down like this before she was treated. Not sure what to do for the best. She always tests first thing in the morning on an empty stomach.

[greygoose]

Has she had her antibodies tested?

[Hidden in reply to greygoose]

yes she was positive for autoimune

[SeasideSusie Remembering in reply to Hidden]

Hustler

So there's the answer, and the doctor knows nothing about autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it, and the antibody attacks cause fluctuations in symptoms and test results. It's sometimes necessary to adjust medication. When the antibodies attack they dump a load of thyroid hormone into the blood and this can cause a hyper-type swing and it can be useful to lower Levo at the time. These swings are temporary and when things go back to normal, readjustment of Levo dose should be made. Unfortunately most doctors have had an information bypass where this is concerned and they panic and either make ridiculously large changes to dose of levo or even stop it altogether. Just as bad is when they blame the patient for either being non-compliant with their meds orn sayn they are abusing them!

Adopting a strict gluten free diet can help reduce antibodies. Gluten contains gliadin which is a protein thought to trigger antibody attacks. Supplementing with selenium L-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

chriskresser.com/the-gluten...

hypothyroidmom.com/hashimot...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

Hashi's and gut/absorption problems tend to go hand in hand and very often low nutrient levels or deficiencies are the result. It's important now to get vitamins and minerals tested:

Vit D

B12

Folate

Ferritin

And if ferritin is low then:

Full blood count

Iron panel

[Hidden]

Hi there thanks for getting back to me, she has been gluten free for 5 or six months now although i think she has fallen off the wagon a bit lately. she was also taking selemium for about 6 or 7 months but stopped about a month ago because i had read it can build up and thought she may need a break from it. She has had some other tests done.

Sept 2016

(MCHC) 310 g/l (320-360) low

Doctorr said this is normal for a girl her age.

B12 348 (197-771)

Folate 9.7 (4.6-18.7)

June 2017

Serum transferrin 2.55g/l

Serum ferritin 46 if/L (13-150)

Serum iron level 19

August 2017

Vit D 80

I have been giving her vit b complex for a while now and over the summer I gave her b12 as well. I give her a product called Hempa plex which has 48mg of iron as well as some B vits. She was also takes selenium with zink (although has stopped about a month ago) probiotics, magnesium and vit d.

I don't know what else to do as this result is worse than when she was only taking 25. The doctor had suggested 50 after 25 didn't work but the results were so high. I thought alternating would be the answer but its worse now. I should have added at my first post that he didn't just say maybe we shouldn't have started treating her, he also has suggested now that we try taking 50 for 5 days and 25 for two. To be fair to my doctor does try to be helpful.

[SeasideSusie Remembering in reply to Hidden]

Hustler

(MCHC) 310 g/l (320-360) low

Doctorr said this is normal for a girl her age.

I find that a particularly stupid remark by your doctor. There is a range, presumably that range appertains to your daughter's age (after all, her age will be on the forms), so she is below range, and that wont be normal.

You can check out what low MCHC means here labtestsonline.org.uk/under... and it says

•Mean corpuscular haemoglobin concentration (MCHC) is a calculation of the concentration of haemoglobin inside the RBCs. Decreased MCHC values (hypochromia) are seen in conditions where the haemoglobin is abnormally diluted inside the red cells, such as in iron deficiency anaemia, long standing inflammation or thalassaemia.

I think you should discuss this with your daughter's doctor.

Full blood count/iron panel should be looked at together.

You haven't given ranges for serum iron or transferrin so I can't comment.

However, her ferritin is low. For thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range. She can help raise her 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 her diet apjcn.nhri.org.tw/server/in...

**

B12 is low. An extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

You could check to see if she has any signs of B12 deficiency here b12deficiency.info/signs-an... and if she has then post on the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc

**

Vit D is also a bit low. The Vit D Council recommends a level of 100-150nmol/L. She would benefit from taking about 3000iu daily throughout the winter months and retesting around March time. 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.

[Hidden in reply to SeasideSusie]

Sorry its taken me so long to reply, i'm having phone problems, so had to wait until i was home at my computer. Thanks for all this information on supplementing . I thought it was strange myself for him to say her HCMC was normal for a teenage girl, I started giving her iron anyway, but i will bring it up with him again. She doesn't eat meat so liver is not an option. Do you think it is ok to keep giving her selenium, some sites i look at say it can build up and become toxic and some say its ok for up to 2 year, i feel like she was better while she was on it. Her TSH fluctuates so much, even before she was treated, its different nearly every time shes tested so i think its hard for the doctor to know what to do. I understand what your saying about the auto immune attacks dumping stuff into the blood, but do you think its normal for it to happen so often

[SeasideSusie Remembering in reply to Hidden]

Hustler

Check out the other iron rich foods, there is bound to be something you can include.

If you're worried about her selenium level, you can get that tested privately if you can't get your GP to test it

Blood (fingerprick or venous) medichecks.com/selenium-tes...

Red cell (venous) medichecks.com/selenium-tes...

Urine medichecks.com/selenium-tes...

I don't know which is supposed to be best, that's something you might find out if you Google.

Are her blood tests always done under the same conditions? We always advise

1) Earliest appointment of the morning, no later than 9am, same time every time if possible.

2) Fast overnight

3) Leave off Levo for 24 hours, take after blood draw.

(1) and (2) will give the highest possible TSH (it's highest early in the morning and lowers throughout the day, it also lowers after eating) which is needed when looking for an increase in dose or to avoid a reduction.

(3) Taking Levo before the blood draw means that the result will be higher than normal as it will be measuring the hormone you've just taken. A high FT4 might prompt a doctor to lower dose of Levo.

I don't think there is any 'normal' where Hashi's is concerned. Level fluctuate, how much and how often is purely down to the individual's antibody activity.

If you read the links and learn about Hashi's, you may even be able to educate the doctor.

[Hidden in reply to SeasideSusie]

This is very helpful, thank you so much for your time. We do fast, stay of levo for 24 hrs and go to Dr as early as possible but even thou we are the first appointment of the day they never take us until just after 9. The nurses always tell my daughter to eat before she comes next time, I explain to them why she wont be doing that every time we go, they are probably sick of me quoting things i have learned from this site. lol

[SeasideSusie Remembering in reply to Hidden]

Hustler

Just don't discuss anything with the nurse, no need to say she's fasted or left off Levo. These are patient to patient tips which we just don't discuss with doctors or phlebotomists. Not worth getting into it with them, the nurse's job is to take blood, end of.

[SlowDragon Administrator]

Your GP is not understanding how Hashimoto's progresses

She needs a dose INCREASE.

The Thyroid packs up more and more as time goes on. Her dose will need increasing in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Increase dose to 50mcg daily and retest after 6 weeks. She is likely to need further increase(s)

50mcg is only a standard starter dose.

Sticking to strictly gluten free diet should reduce Hashi flares

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...

Her vitamin levels were not good. If not been tested since September 2016 they need retesting

See SeasideSusie many detailed replies on vitamin supplements

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email [e-mail]. print it and highlight question 6 to show your doctor.

Prof Toft - brilliant article just published

rcpe.ac.uk/sites/default/fi...

[Hidden in reply to SlowDragon]

Slow Dragon, sorry its taken me so long to reply, i'm having phone problems, so had to wait until i was home at my computer. The doctor did give her an increase, he said to try 50 five days a week and 25 two days, instead of alterante days. Do you think that going by what Dr Toff says, she was ok when she was on 50mg - TSH 0.05 (0.51-4.3) and T4 27.4 (12.6-21) she did feel ok on this dose, not over medicated as far as i could tell, but Dr said try the 50 and 25 on alternate days. Thank you for all the links you sent me, between you and Seasidesusie I have a lot of reading to do this weekend. lol.