Hi I have just joined this forum after a very bad day at the GP and it has really upset me and doubting myself, I hope it’s ok to share.
I was diagnosed with underactive thyroid in 2013 and I have not been feeling well for about 10 years beforehand. Parents have said I have had nervous breakdowns because of feeling unwell all the time and I felt so bad I had to be off work for ill health. Turned out I had hypothyroidism with elevated antibody levels. My GP and endo have since been treating me like a mental patient and after a long time of being on levothyroxine my symptoms have never been liveable and I have fatigue, headaches, heavy periods that drain me, dizziness and tinnitus and joint pain for 20 years. Last month I came over incredibly dizzy during a heavy period and I am now getting this dizziness sitting. I feel unbalanced and dizzy, legs feel achy, I feel fat even though I am not. I lost my late teens, twenties and early thirties to this illness and I am so upset I really feel like I want to cry. I just feel that no one I know understands what I feel. I am taking 50mcg levothyroxine. Any advice is welcome.
October 2017
Thyroid peroxidase antibody 475 (<34)
Thyroglobulin antibody 355.3 (<115)
Written by
Callee
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Thanks Jane, no I haven't had my medication increased. I was hoping either the endo or GP would do it. I haven't had results of my vitamins or minerals yet and I take 800iu vitamin D and 1 iron tablet a day.
Do you take your Levo first/last thing just with a glass of water? away from food/drink.
Iron & supplements should be taken at least 4 hours away from Levo.
I've never taken iron tablets so cannot recommend a good one - except they are best taken with orange juice so I'm informed (helps absorption and helps stops constipation).
IMHO 800iu isn't enough for a gnat! What was your level?
I was low Vit D & took 5000iu daily until I reached 100nmol/L & then supplemented 1000iu Autumn to Spring-time.
Thanks yes I take my levothyroxine first thing in the morning with just water and I leave about 3 hours away from food and drink. I take iron in the evening. My level of vitamin D was 32.2 (25 - 50 vitamin D deficiency. Supplementation is indicated) and that was tested in January 2017
Do you think you can you go back & ask for additional tests and an increase in Levo? (based on your TSH level) - can you take someone with you & make sure you don't take it on the morning of a test (to avoid a false reading) fast & get tested first thing.
I haven't got anyone to take with me unfortunately, they all keep out of anything related to my health so I am always having to speak for myself. I find it very hard to stand up for myself when I am on my own
Sorry to hear your hubby took sides with the GP! I can take a friend from work, she has been worried about me since she has noticed a dip in my performance
your TSH is well over range & FT4 at the bottom of the range - any GP should increase your dose accordingly. You could ask to see a different GP. Most folk on treatment feel better when their TSH is under 1, sadly GPs think middle range is correct & it isn't! If you look up member Diogenes, I think he was involved in creating the tests.
Callee Unfortunately your story is one we're reading every day here, multiple times. Your GP and endo are clueless, they haven't got any idea how to treat hypothyroidism so they cover their ignorance up by blaming the patient somehow.
Have you ever been on more than 50mcg Levo, surely you haven't only been on that dose since 2013?
TSH 6.5 (0.2 - 4.2)
Free T4 13.7 (12 - 22)
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. You need an immediate increase in your Levo and here is some information you can take to support your request - from 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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Thyroid peroxidase antibody 475 (<34)
Thyroglobulin antibody 355.3 (<115)
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.
Read and learn about Hashi's because you'll need to help yourself. Most doctors dismiss antibodies as being of no importance and know nothing about how Hashi's affects the patient.
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.
Hashi's and gut/absorption problems go hand in hand and very often result in low nutrient levels. Nutrients need to be at optimal levels for thyroid hormone to work, so we have a viscious circle and need to address all the problems.
We already know you're deficient in Vit D -
Vit D was 32.2 (25 - 50 vitamin D deficiency. Supplementation is indicated) and that was tested in January 2017 - 800iu D3
Well, 800iu D3 isn't going to ever raise your level. It is hardly a maintenance dose for someone with a reasonable level. Unfortunately, you were just over the level where you should have been given loading doses. You could ask for a retest and see where your level lies now, I doubt it will have increased but if it has decreased to 30 or lower then you could ask for loading doses - see
"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.
If you can't get loading doses then you will need to buy your own supplement and treat yourself. You will need 10,000iu daily for 3 months then you'll need to retest. If the new level is below 70 I would then take 5000iu daily for a couple of months then reduce to 5000iu alternate days and retest again 3 months after starting the 5000iu daily. When you've reached the level 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
Normally I would recommend D3 softgels but as you are Hashi's you should find that an oral spray is better absorbed. BetterYou do 1000iu and 3000iu doses and you could start with the 3000iu dose and triple it to start with (so 9000iu in place of 10,000iu), then lower to 6000iu, then 3000iu. They do a D3/K2-MK7 combined spray if you prefer to not to have separate D3 and K2 supplements.
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You say you are taking 1 x iron tablet a day. Is this prescribed? What is it treating? Low Ferritin or Iron Deficiency?
We really need to see the results of all the vitamin and mineral tests as I imagine all levels will be low and will need supplementing more than what you are prescribed. When you have the results, please post again with the levels and say what you are taking.
Iron deficiency anaemia treatment is 2 or 3 x ferrous fumarate daily, you might want to point this out to your GP and get the appropriate treatment or you'll be stuck with it forever - see NICE Clinical Knowledge Summary for iron deficiency anaemia treatment (which will be very similar to your local area guidelines):
•Address underlying causes as necessary (for example treat menorrhagia or stop nonsteroidal anti-inflammatory drugs, if possible).
•Treat with oral ferrous sulphate 200 mg tablets two or three times a day.
◦If ferrous sulphate is not tolerated, consider oral ferrous fumarate tablets or ferrous gluconate tablets.
◦Do not wait for investigations to be carried out before prescribing iron supplements.
•If dietary deficiency of iron is thought to be a contributory cause of iron deficiency anaemia, advise the person to maintain an adequate balanced intake of iron-rich foods (for example dark green vegetables, iron-fortified bread, meat, apricots, prunes, and raisins) and consider referral to a dietitian.
• Monitor the person to ensure that there is an adequate response to iron treatment.
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.
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The protocol when diagnosed with hypothyroidism and prescribed Levo is to repeat testing every 6-8 weeks with an increase of 25mcg each time until you feel well and symptoms abate. If your GP didn't do this he was negligent. And now you know you are undermedicated and need an increase as mentioned above so you should ask for one.
If your GP wants to know where you have got your information, tell him that you have contacted NHS Choices recommended source of information for thyroid disorders, which is the charity ThyroidUK. Don't mention internet or forums, they don't like that and will ridicule you.
(((Callee))) I'm only looking to pay it forward today where I can and you are the third new poster to have a fecking doctor stupid advising you today. I must get to bed now but here are their stories so you don't feel so alone. You've had some great advice.
Another important thing is while you must ensure your thyroid tests are in the morning don't say anything to anyone treating you at your GP practice or even an endo about this.
Many doctors and other healthcare professionals don't think the timing of diagnostic tests is important and a couple of GP practices have reportedly blocked a few members of this forum they have treated from having morning blood tests if they have mentioned why they wanted their thyroid tests in the morning. Instead if asked to have an afternoon thyroid blood test just make up legit excuses why you can only have a test first thing in the morning e.g. work commitments.
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