Hi, here are my new results. I am 20 years old, female, and have been unwell for as long as I can remember. I had glandular fever when I was a child and there were more than one occasions where I was unwell with vomiting and diarrhoea.
I had a thyroid blood test done in January 2017 which showed a TSH above range 6.2 (0.2 - 4.2) and FT4 13.7 (12 - 22) and FT3 4.0 (3.1 - 6.8) no treatment was given and I was told the levels meant I was hyperthyroid. However I have been getting many hypothyroid symptoms and I have taken the ones from the Thyroid UK symptoms list: excessive tiredness, slow movements, slow speech, pins and needles, breathlessness, palpitations, anaemia, insomnia, loss of libido, repeated urinary tract infections, heavy eyelids, hoarse voice, muscle cramps and stiffness, goitre, cold intolerance, diminished sweating, vertigo, balance problems, dizziness, puffy eyes and face, choking fits, dry mouth, sore throats, difficulty swallowing numbness and hands and feet and legs, memory loss, poor concentration, lack of confidence, tinnitus, deafness, heavy periods, low fertility, slow pulse, headaches, dry skin, eczema, carpal tunnel syndrome, brittle and flaky nails, body hair loss and head hair loss, brittle hair, eyebrow loss and eyelash loss.
I also have low B12, low folate, low vitamin D and low ferritin and low calcium. Only thing is I haven't gained weight so the GP has considered this a red herring and he thinks I have coeliac disease. I had infantile eczema when I was child, as well and this has continued mildly into my early years as a young adult. I was sent for an ultrasound scan on my thyroid which showed a damaged and hypoechoic gland.
My new results are below and I have been started on 50mcg Levothyroxine and due a retest in 6-8 weeks.
Any advice about what to do next would be appreciated, thank you.
TPO antibodies 445 (<34)
TSH 10.3 (0.2 - 4.2)
Free T4 10.1 (12 - 22)
Free T3 3.2 (3.1 - 6.8)
Ferritin 33 (30 - 400) prescribed ferrous fumarate 3x day since 2014
Folate 2.1 (2.5 - 19.5) prescribed folic acid
Vitamin B12 251 (190 - 900)
Vitamin D total 40.3 (25 - 50) taking 800iu since 2014
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Ellie290
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So now you make an appointment, preferably not with the one that said you were hypERthyroid, and say that your TSH is over 10 with below range FT4 and you understand that confirms hypOthyroidism and will they please give you a prescription for Levothyroxine. Tell the GP that you also understand that over range antibodies confirm autoimmune thyroiditis (their term for Hashimoto's).
They should start you on no less than 50mcg and you must ensure that you have retests/increase of 25mcg Levo every 6-8 weeks until your symptoms abate and your TSH is low in range and FT4 and FT3 in the upper part of their reference ranges. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo.
[When booking thyroid tests, always book the very first appointment of the morning, fast overnight (water allowed) and leave off Levo for 24 hours. This gives the highest possible TSH which is needed when looking for an increase in dose or to avoid a reduction. TSH is highest early morning and lowers throughout the day. It also lowers after eating. This is a patient to patient tip which we don't discuss with doctors or phlebotomists.]
If the GP wants to know where you've got your information, don't mention the internet or forums, they don't like that. Say you have taken advice from NHS Choices recommended source of information for thyroid disorders - and that is Thyroid UK (this is their forum). You can take a look around TUK's website for lots of information thyroiduk.org.uk/tuk/about_... - work down the purple menu on the left hand side.
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As far as your over range antibodies are concerned, this confirms 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.
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.
Doctors attach little or no importance to antibodies and don't understand how Hashi's can affect the patient, their symptoms and test results. Expect no help from your GP but read, learn, understand and help yourself where this is concerned.
Hashi's and gut/absorption problems tend to go hand in hand and very often low nutrients are the result as we can see with yours.
Ferritin 33 (30 - 400) prescribed ferrous fumarate 3x day since 2014
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 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...
As you are prescribed 3 x ferrous fumarate I assume you have been diagnosed with iron deficiency anaemia. Are you under a haematologist and being monitored? You need to ask why your ferritin is so low considering how long you've been taking FF. The reason is probably an absorption problem and they should be investigating this.
Before starting the folic acid, were you checked for signs of B12 deficiency? If not you should have been, do that now b12deficiency.info/signs-an... and be aware that taking folic acid masks these signs so think back to before you started taking it.
If you do have signs of B12 deficiency then go and post on the Pernicious Anaemia Society forum for further advice as you may need testing for Pernicious Anaemia, you may need B12 injections, and all this should be done before starting folic acid healthunlocked.com/pasoc
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."
Your B12 level is too low, but this needs to be discussed with the PA forum or your GP as I don't think self supplementing at that level is the best idea without further investigation.
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Vitamin D total 40.3 (25 - 50) taking 800iu since 2014
This really begs the question why, after 3 years of supplementing, are you still deficient. The answer is because you're not taking enough. If your level was less than 30 when you were first prescribed D3 then you should have had loading doses. If over 30 then your GP has to stick to the guidelines which say 800iu but it's not enough to raise your level.
The Vit D Council recommends a level of 100-150nmol/L. You would be better off buying your own supplement and I suggest, because you have Hashi's, that an oral spray is best for absorption. Look at BetterYou which comes in 1000iu and 3000iu doses. Buy the 3000iu dose and double dose so that you take 6000iu daily for 3 months and then retest.
When you've reached the recommended level 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
BetterYou do a combined D3/K2-MK7 so you would then only need to get the magnesium.
Your calcium level may improve with optimising your Vit D, but you must take the K2-MK7 to direct the calcium where it needs to go. If your calcium level stays low when your Vit D is optimal, you may need that looking into.
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The absorption problem needs addressing for nutrients to be absorbed. Nutrients need to be at optimal levels for thyroid hormone to work (your GP wont know this) so check out SlowDragon 's reply to this post for information and links which will help healthunlocked.com/thyroidu...
So it's taken 3 years for Vit D to rise from below 30 to 40.3 - your GP should be ashamed of himself. These are basic things that if he doesn't know it's not hard to find the guidelines. He now can't give you more than 800iu daily, so just treat yourself.
As far as your iron deficiency is concerned, I think you should be asking for investigations into malabsorption considering you've been taking 3 x FF for 3 years and are your ferritin has barely scraped into range and presumably you still have iron deficiency anaemia.
You are very hypothyroid, need to start on replacement thyroid hormone (Levothyroxine) at 50mcg and be retested in 6-8 weeks. Dose likely to need further increases and testing each time until,TSH is around one and FT4 towards top of range and FT3 at least half way in range.
You need testing for Pernicious Anaemia before B12 injections (GP may say B12 is not low enough for injections)
Folate needs supplementing but not until after B12 testing and first injection
Vitamin D, dose given was totally inadequate. How low was it when first diagnosed, did you get loading dose then?
Now need to get your own vitamin D. Mouth spray by Better You is good as avoids poor gut function. 3000iu daily may be enough to increase level to around 100nmol.
Should test twice yearly- vitamindtest.org.uk - £28 postal kit
Ferritin - very low. Ask for full evaluation for Anaemia. You may need iron infusion. It would bring level up quickly
Eating liver once a week will help improve too
You 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
With Hashimoto's, 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
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
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