I took on board all your advice but my GP was very dismissive and told me all the usual "textbook" Subclinical hypothyroid blurb. He did, however, refer to the specialist endocrinology team.
In the meantime I have had another Thriva blood test and my results were as follows:
TSH 5.37mlU/L (2.5-4.2) - my NHS result a month ago was 9.16 (0.30-4.40)
FREE T4 10.2pmol/L (12-17) - NHS a month ago was 11.0pmol/L (9.0-19.1)
T4 77nmol/L (66-181)
TPOab 144.2klu/L (0-34) - NHS a month ago was 230.7 (0-34)
TgAb 112.7klu/L (0-115) - last result was in May and was 157.1klu/L (0-115)
I haven't been on any medication or treatment other than just starting a multivitamin this last week (after my latest results).
I had an awful day yesterday where I was so fatigued, I just wanted to sleep, I couldn't even think straight, was dizzy and air hungry. It made me so anxious, I was scared and had awful panic attacks.
I have spoken to another GP today and he told me the endocrinology team suggested a 3 month trial of Levothyroxine starting at 50mg. He dismissed all my other symptoms as being unrelated, but has referred me to ENT as he could hear the hoarseness in my voice.
I would appreciate any thoughts and advice on these latest developments please? My anxiety is through the roof. Any advice on starting the Levothyroxine would also be so much appreciated.
I am so thankful this hub is here.
Ally x
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Allyfin1
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I have spoken to another GP today and he told me the endocrinology team suggested a 3 month trial of Levothyroxine starting at 50mg.
Well that's a start. By the way, it's micrograms (mcg) not milligrams(mg), there's a vast amount of difference, 50mg would blow your head off!
It might be worth noting that Teva brand of Levo has upset many members with adverse reactions. Teva is a lactose free brand and it contains mannitol instead of lactose. It's believed the mannitol is the cause of the problems. You may be OK with Teva and it may be worth a try if this is dispensed, just be aware that if you do have any problems it could be the brand.
For your information the following brands are one and the same tablet, all made by the same manufacturer Accord.
Accord 100mcg and 50mcg
Almus (repackaged Accord as a Boots own brand) 100mcg and 50mcg
Northstar (repackaged Accord as a Lloyds Pharmacy own brand) 100mcg and 50mcg
Northstar 25mcg is Teva not Accord.
Take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours (iron, calcium, Vit D, magnesium, HRT, oestrogen, PPIs, eg Omeprazole).
It's normal to re-test 6 weeks after starting Levo, increase dose, retest 6-8 weeks later, retest, and continue until levels are where they need to be for you to feel well. It may be that they just want to trial 3 months and then retest. Whatever they do, always do your tests as follows:
* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH
* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex or any supplement containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with phlebotomists or doctors.
I gave you information about Hashi's in reply to your previous post so you might want to consider a gluten free diet.
I haven't been on any medication or treatment other than just starting a multivitamin this last week (after my latest results).
Can I suggest that you throw your multivitamin away. They are not recommended for many reasons. They do not contain enough of any active ingredient to improve a low level or deficiency. They tend to contain the cheapest, least absorbable and wrong forms of active ingredients. They usually contain things we should test for first and only supplement if found to be necessary, eg iodine, calcium, iron, Vit D.
If they contain this affects the absorption of everything else as iron needs to be taken 2 hours away from any other supplement.
I would point out the dire nutrient levels you posted previously:
Active B12 - 31
This is below range and suggestive of B12 deficiency as mentioned before. Did you check the list of signs and symptoms for B12 deficiency? Did you ask your GP to do further testing. I think it is extremely important for this to be followed up with further testing, you could very well need B12 injections. Over the counter supplements are unlikely to help such a dire level.
Vit D - 52nmol/L
I gave you information about what you need to optimise this.
A multivitamin will not help either of these levels, you need to supplement individually, the B12 after further investigation.
Thank you once again for such an informative reply (and for correcting my micro gram mistake lol 😆)
I haven’t had my Vit D retested yet, but I am taking a daily supplement in pure soft gel form (I researched it and it was highly recommended).
My GP tested my B12 based on my dire Active B12 results. But he is now adamant that my levels are normal ( he just could not grasp the difference between the NHS standard test and the Active B12 test, no matter how much I tried to explain).
I am taking Better You B12 mouth spray daily now though.
I did some research to find out if supplements could help and which ones. I came across the one I am taking as I thought it seemed good. It’s Nature’s Best Multi-guard Iron Free. It’s recommended for thyroid issues and is gluten free.
I’ll attach a pic of the ingredients.
I thought it was a good start but let me know what you think, if I would be better off supplementing individually.
I have been very wheezy and breathless these last few days and my anxiety is off the scale. So, I still haven’t taken my first dose of Levothyroxine yet, I can’t bring myself to overcome that fear of reaction/bad side effects. It’s a real phobia I struggle with, I have really bad panic attacks and feel I can’t breathe. It’s awful.
My GP tested my B12 based on my dire Active B12 results. But he is now adamant that my levels are normal ( he just could not grasp the difference between the NHS standard test and the Active B12 test, no matter how much I tried to explain).
I am taking Better You B12 mouth spray daily now though.
I can only repeat that your B12 is dire and you may very well need B12 injections but you really should be tested for B12 deficiency and pernicious anaemia (one cause of B12 deficiency).
Regardless of the fact that your GP doesn't understand about Active B12, your serum B12 level is awful and many people with B12 in the 300s have been found to need B12 injections.
Did you check for signs/symptoms of B12 deficiency? I gave you links to do this in reply to your other post. Do you have any? If so did you list them for your GP. They are supposed to take symptoms over test results.
If you want further help about how to go forward with this pop over to the Pernicious Anaemia forum here on HealthUnlocked, put your B12 Serum Test result on there and list your symptoms from the B12 deficiency lists. See what they say:
I would stop the B12 spray until you've had guidance from them.
I came across the one I am taking as I thought it seemed good. It’s Nature’s Best Multi-guard Iron Free. It’s recommended for thyroid issues and is gluten free.
I thought it was a good start but let me know what you think, if I would be better off supplementing individually.
Who says it's recommended for thyroid issues? Natures Best don't, they say they have omitted iodine as those with thyroid issues must avoid it, but the supplement isn't recommended for thyroid issues.
I will list what is wrong with that multi, in common with all multi's:
Vit K1 - this is wrong form of Vit K to be taking. It is the blood clotting form. The form necessary when taking D3 is Vit K2-MK7. Also the amount is too low even if it was the correct form.
Folic acid - the recommended form is methylfolate, the bioavailable form. Folic acid needs to be converted.
B12 - they include the cyanocobalamin form whereas the recommended form is the bioavailable methylcobalamin. Also it's a measly 20mcg which wont help with low levels.
Calcium - should be tested before supplementing.
Magnesium - they use magnesium oxide which is very poorly absorbed and tends only to be used as a laxative.
Selenium - this is the selenite form and not recommended. The two best forms are selenium L-selenomethionine and yeast bound selenium, they are both well absorbed. Selenite and selenate forms should be avoided as they are poorly absorbed.
Zinc and Copper - these should be balanced and we Hypos tend to have one high and the other low, so they should be tested first.
My suggestion of throwing this away still stands and supplement what you need at the correct doses with the necessary cofactors that may be needed.
Your post has appeared three times so I will delete the two others.
Thanks so much!I will research everything you’ve advised and recommended. I have so much to learn. My GP is awful and you can’t even get a doctor who will see you face to face these days, not even on video consultation. How on earth can they treat you adequately based on rushed, 10 minute telephone conversation. I seriously have to look at changing doctor. And looking out for my own health.
high thyroid antibodies confirms cause is autoimmune thyroid disease also called Hashimoto’s
50mcg is standard starter dose levothyroxine
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
Multivitamins are never recommended on here, too little of what you actually need, usually cheap poorly absorbed ingredients, plus most include iodine, not recommended for anyone with Hashimoto’s
Vitamin D
GP will often only prescribe to bring vitamin D levels to 50nmol. Some areas will prescribe to bring levels to 75nmol or even 80nmol
I have found that GPs (in the majority) fail to know very much about how to diagnose/treat patients who have dysfunctional thyroid glands. One of mine told me that T3 converted to T4 - untrue. It is the reverse.
I have listened to some wrong statements from those who we would expect to know more than us, the patients.
I'm really sorry you had panic attacks due to feeling very unwell. The 'modern-day doctors' do not have the training our 'old-fashioned doctors' had as they could diagnose us without blood tests but going by our clinical symptoms alone.
Our members - some who are very knowledgeable indeed - the majority are not qualified but know far more and are very helpful and give excellent advice due to having similar negative experiences.
I'm sure you will find assistance to become fit and well again.
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