Hi
New member
Currently taking 50mcg levo
Diagnosed with underactive 2011
Symptoms are
Pains in fingers
Joint pain
Painful periods
Heavy periods
Dry skin
Flaky skin
Puffy face
Puffy eyes
Hair thinning around eyebrows
Eyelashes falling out
Hard stool
Memory loss
Poor concentration
Weight gain gone from a size 4 to a size 12
Coldness of feet
Tiredness
Am I undermedicated
Thank you
TSH *7.2 mIU/L (0.2 - 4.2)
Free T4 13.6 pmol/L (12 - 22)
CharliJ87 welcome to the forum. What has your GP said about your TSH of 7.2? Have you had your vitamin levels tested and have you got thyroid antibodies?
Hi endo doesn't think I have thyroid antibodies. Thyroid peroxidase antibodies >1500 IU/mL(<34) Thyroglobulin antibodies 256.3 IU/mL (<115)
What kind of antibodies does he think you have then? The lab has clearly identified them as thyroid antibodies.
Sounds like you need a new doctor as shaws says, especially considering you are deficient in essential vitamins. What has been done about it? What have you been prescribed, when were these vitamin results done and who has contacted you about them?
You don't give the date of these blood tests? Are they recent? When is your next test due. They need to be 6 weeks after these.
Are they from 2011?
Is there a reason you are only on 50mcg?
Are you on any other medications?
Have you had any blood tests to check nutrients levels of:
Vitamin D
B12
Folate
Ferritin
Calcium
If not, ask GP for them.
If the results you have given are recent, then an increase by 25mcg of Levothyroxine should normally have been prescribed. Have you seen your GP since these bloods? Ask if you are going on to 75mcg dose. If not then why ?
Hi results were done a month ago and there is no reason why I am only on 50mcg and I am on no other medication. I have results of other things and they are below. GP has not seen me since these bloods.
Ferritin *14 ug/L (30 - 400)
Calcum 2.24 nmol/L (2.20 - 2.60)
Calcium adjusted 2.25 nmol/L (2.20 - 2.60)
Folate *1.7 ug/L (2.5 - 19.5)
Vitamin B12 *153 pg/L (180 - 900)
Total 25 OH vitamin D 27.7 nmol/L
Your B12 level is so very, very low you need an intrinsic factor test to exclude that you have a more serious illness than a B12 deficiency. I'd switch doctors first as its no good talking to someone who is so dangerouslly inefficient.
You could have undiagnosed Pernicious Anaemia.
I will add SeasideSusie who will comment upon the numbers.
Change your doctor as he is incompetent. Unfortunately some doctors believe if our TSH is 'somewhere' in the range their job is done. In other countries the top of the range for diagnosis is 3+ for TSH. In UK it is 10 and even though the top of the range (once diagnosed ) is around 5 they think that's fine. It is not.
Your dose is abdominally low at a starter dose. Your TSH is a disgrace at 7.2.
50mcg is a starting dose and is increased every six weeks by 25mcg until TSH is 1 or below. Doctors are unaware of this fact it seems to me as your post isn't unusual.
Levothyroxine is repacement T4. T4 is inactive and has to convert to the Active Hormone T3 (the only Active hormone required in all of our T3 receptor cells). The fact that your FT4 is at the bottom of the scale it stands to reason T3 is also.
We have to read, learn and ask questions in order to recover our health as doctors are so poorly trained they know nothing and yours is satisfied as yours are 'in range even though TSH is too high and FT4 too low. It should be towards the upper part of the range.
Blood tests have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and test and take afterwards. If taken before test the results are skewed.
You can tell your GP you've been advised an immediate increase is required as you've taken advice from the NHS Choices for information/advice about dysfunctions of the thyroid gland.
He will not or lab will not do the following so you may have to get a private test for those not tested. He should definitely test B12, Vit D, iron, ferritin and folate. All have to be optimum. They should be taken at the same time as your blood test.
Always get a print-out from the surgery from now on and the ranges should also be shown for your own records and post if you have a query.
Also levo should be taken first thing with one full glass of water and wait an hour before eating as food interferes with the uptake of the hormones.
CharliJ87 Well, I don't know whether to cry or burst with anger. You have such a total jerk for a GP, FGS what is he doing, he should be in another job where he can't hurt people!
TSH *7.2 mIU/L (0.2 - 4.2)
Free T4 13.6 pmol/L (12 - 22)
50mcg Levo
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. Go and ask (politely if you can manage it, I certainly wouldn't be able to).for an increase of 25mcg immediately, followed by a retest in 6-8 week's time and another increase of 25mcg, then repeat and repeat until your levels are where they should be and you feel well. In support of your request for an increase see thyroiduk.org.uk/tuk/about_... > Treatment Options:
According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.
The booklet is written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It's published by the British Medical Association for patients. Avalable on Amazon and from pharmacies for £4.95 and might be worth buying to highlight the appropriate part and show your doctor. However, I don't know if this is in the current edition as it has been reprinted a few times.
Also -
Dr Toft 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 article by emailing louise.roberts@thyroiduk.org print it and highlight question 6 to show your doctor.
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endo doesn't think I have thyroid antibodies. Thyroid peroxidase antibodies >1500 IU/mL(<34) Thyroglobulin antibodies 256.3 IU/mL (<115)
As Nana says, what does he think these are then (but I wouldn't have been so polite, a naughty word might have just crept in!).
Your high antibodies mean 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.
Most doctors know little to nothing about Hashi's and attach no importance to antibodies. However, they do affect the patient so you need to read and learn, educate yourself so you can help yourself as you're certainly getting no help from your GP.
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.
Gluten/thyroid connection: chriskresser.com/the-gluten...
stopthethyroidmadness.com/h...
stopthethyroidmadness.com/h...
hypothyroidmom.com/hashimot...
thyroiduk.org.uk/tuk/about_...
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Hashi's and gut/absorption problems go hand in hand and very often low nutrients are the result, yours are absolutely dire and need immediate and appropriate treatment.
Ferritin *14 ug/L (30 - 400)
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 also 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...
You also need an iron panel and full blood count to see if you have iron deficiency anaemia, which low ferritin often suggests.
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Folate *1.7 ug/L (2.5 - 19.5) Vitamin B12 *153 pg/L (180 - 900)
Please go straight over to the Pernicious Anaemia Society for further advice healthunlocked.com/pasoc Quote your folate/B12/Ferritin results (and any iron deficiency information) and any signs of B12 deficiency you might be experiencing from this checklist: b12deficiency.info/signs-an... You are folate and B12 deficient, as shaws says you should have intrinsic factor antibodies tested as you could have Pernicious Anaemia and you may need B12 injections. You will need folic acid prescribing for the folate deficiency but you must not start this until other investigations have been completed, and B12 must be started before folic acid.
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."
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Total 25 OH vitamin D 27.7 nmol/L
You are 2.2 away from severe deficiency, you need loading doses of D3 (refuse to accept a prescription for 800iu, it must be the loading doses) - see NICE treatment summary for Vit D deficiency:
cks.nice.org.uk/vitamin-d-d...
"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
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.
When you start buying your own D3 you should use an oral spray for better absorption. BetterYou do a D3 one and also D3/K2-MK7 combined.
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As for the absorption problem associated with Hashi's, please see the reply by SlowDragon in this thread which has information and links on how to deal with it. This problem needs to be sorted so that your supplements can be absorbed, then once vitamins and minerals are at optimal levels thyroid hormone can work.
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Personally I would give this d**k of a doctor a very wide berth, see a different one, get treatment sorted and then seriously consider making a formal compaint against this one who has ignored these results.
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