I am new here, I am 18 and I have been taking levothyroxine since the age of 10 for hypothyroidism. I am having symptoms of stool that is hard to pass, tiredness, anxiety, depression, confusion, dizziness, ears ringing, flaky skin, hair loss, feeling cold. Am I likely undermedicated. My last thyroid test was done in January 2017 and came back in range, ferritin was found to be low but was passed off as no action required. I take 50mcg levothyroxine.
Thank you
TSH 6.2 (0.2 - 4.2)
Free T4 12.9 (12 - 22)
Free T3 3.2 (3.1 - 6.8)
Ferritin 12 (15 - 150)
Folate 1.7 (2.5 - 19.5)
Vitamin B12 158 (180 - 900)
Vitamin D 23.1
Written by
Shonah
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Can you post your latest tests with ranges? We can be more specific in our advice then. And have you had tests for vit D B12 folate and ferritin? Nutrient deficiencies can add to our symptom list. Welcome to the forum!
Ok I am sorry to say that you are seriously under medicated and need to be treated/ further investigated for the deficiencies. Can you see a doctor in the surgery urgently and get a dose increase of the levo? Also discuss the deficiencies. They tend to overlook the nutrient management but you will get good advice here for that. But a doctor that thinks your TSH is ok for a diagnosed hypo patient is not one you or anyone else should be seeing.
See Thyroid uk page for info on how you should be treated: most of us are better with a TSH of 1-2. You shouldn't have to fight or argue for the correct treatment but most of us understand our conditions better than our doctors.
50mcgs is a starter dose. So you may be under medicated
Ferritin needs to be at good level for our thyroid hormones to be able to work.
Heavy periods are a symptom of being under medicated and the loss of blood can contribute to low ferritin, then makes problems worse.
Other important vitamins are vitamin D, Folate and B12. Have you had these checked.
Do you have high thyroid antibodies? This is Hashimoto's or also called autoimmune thyroid disease
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results.
Was this how your last test was done?
Medics over rely on TSH, which is largely irrelevant when on Thyroid hormone replacement. They should look at FT4 and FT3. FT4 should be near top of range and FT3 at least half way in range.
This shows that you have the autoimmune condition known as Hashimotos. Your body literally attacks your thyroid tissue. There are many things that you can do to help lower the antibodies, or at least cope better. See Amy Myers and Isabella Wentz for detailed advice. Most of us find a gluten free diet suits us better, something like 80% of us are better with it. Lots to read on here and the Hasimotos hypothyroid sites are full of info. But you definately get my poor GP of the day award today. So far anyway.
Your antibodies are very high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
Getting TSH down to around one will help lower these.
About 90% of all hypothyroidism in Uk is due to Hashimoto's
With Hashimoto's, until it's under control, our gut can be badly affected. Low stomach acid can lead to poor absorption of vitamins. Low vitamin levels stop thyroid hormones working.
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten
Just don't expect your GP to know any of this
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
You have an Autoimmune Thyroid Disease called Hashimoto's and it is the commonest form of hypothyroidism.
Going gluten-free can help reduce the antibodies as they attack your thyroid gland until you are hypo and the wax and wane, i.e. sometimes you feel hyper and at other times hypo.
Welcome to our forum and am sorry you've been hypo since you've been ten.
I will tell you and you probably know by now that few doctors know how to treat patients with hypothyroidism and you are in that bracket and you will have to read, learn and ask questions so that you have optimum thyroid hormones which will allow you to have a healthy and fruitful life with no clinical symptoms.
First and most important is that your doctor hasn't given you sufficient thyroid hormones.
The aim is a TSH of 1 or below with Free T4 and Free T3 towards the upper part of the range and your results for these are barely in range.
First things first, tell your doctor you've taken advice from the NHS Choices for information/advice Thyroiduk.org.uk and you need the following:-
Increases of 25mcg of levothyroxine every six weeks until you are symptom free and TSH is 1 or lower (no you will not get a heart attack as most doctors wrongly believe). You are more likely to develop other diseases through too low a dose.
I will add in SeasideSusie who will advise on your woeful minerals/vitamins. You have been neglected and that's why we have to learn more and even if a little and we know more than most doctors.
Doctors are poorly train in hypo problems and many believe that if our TSH gets into range we're on sufficient but that isn't true at all.
My last thyroid test was done in January 2017 and came back in range
Really? Did a doctor tell you that? If so they need a maths lesson!!!!
**
Ferritin 12 (15 - 150)
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.
You need an iron supplement and as your level is so low you should ask for an iron infusion which will raise your level within 24-48 hours, tablets will take many months. 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...
Low ferritin can suggest iron deficiency anaemia. You need to have an iron panel and full blood count carried out. If iron deficiency anaemia is confirmed, the treatment is 2 or 3 x ferrous fumarate daily. Take each iron tablet with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption.
Check for signs of B12 deficiency here b12deficiency.info/signs-an... then please don't delay in posting on the Pernicious Anaemia Society forum for further advice. Quote your B12/Folate/Ferritin results, iron deficiency information if you already have that, plus any signs of B12 deficiency you may be experiencing.
You should be tested for intrinsic factor antibodies, you may have Pernicious Anaemia, you may need B12 injections, you certainly need folic acid for your folate deficiency but don't start taking that until further investigations have taken place and B12 started.
I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:
"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."
And 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."
**
Vitamin D 23.1
You are severely deficient and need loading doses of D3, do not accept a prescription of 800iu as that is a maintenance dose for someone with a good level already - see NICE treatment summary for Vit D deficiency:
"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
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
As you are Hashi's, when it comes to buying your own D3 as a maintenance dose, you would be better off getting an oral spray for best absorption, eg BetterYou.
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