My Dr checked my thyroid levels with some other blood tests without me knowing, so I had taken my T4 (50mcg) about an hour before! Based on the results, she said I was now fine and took me off the medication. I tried to argue saying it needed to be before my meds and she said that was wrong. I had always said the dose was too low anyway as actually felt worse on T4 than before (my free T4 was actually higher off meds than on). I had also given myself 12.5mcg of T3 as never felt great on solo T4. I retested yesterday (been off medication for 5 months) and now have the following:B12 46.4 (37.5 to 188)
VIT D 64.9 (50 to 250)
TSH 5 (0.27 to 4.2)
Free T3 4.3 (3.1 to 6.8)
Free T4 12.5 (12 to 22)
I know I need to sort my vitamin levels but how should I sort my hypothyroidism? I've lost faith in my Dr so will mend myself, I have access to both T4 and T3 just unsure what starting doses to try? Any help much appreciated
Written by
BethH77
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6 months ago you posted these results on 50mcg Levo:
TSH 1.16 (0.27 - 4.2)
Free T3 4.9 (3.1 - 6.8)
Free T4 11.6 (12 - 22)
You were clearly under medicated then, so I’m at a loss why your GP stopped your medication. 50mcg is usually a starter dose, increasing by 25mcg as needed after 6-8 weeks.
When did you introduce the Liothyronine? Did you add 12.5mcg Lio to the 50mcg Levo? How long were you on a combination dose?
TSH should always be under 2, with most members reporting they feel best when this drops below 1.
I added it because I still felt tired? It def helped how I felt but think the results she judged me on where misleading as I'd taken them not long before?
Sorry had been on the T3 with T4 for a year maybe before those Sept results......not long after was the blood test I had not been aware of and my T4 was 14 so she took me off meds
No, it isn't. Taking thyroid hormones before a test will have no effect on the TSH because it doesn't move that fast. I can take weeks to react. Your TSH is low because you are taking T3 every day. That's what T3 does, it lowers your TSH.
No I self sourced but took advice on dose etc. Tried to discuss with GP but she just said it was very dangerous and refused to discuss it further. I am thinking about seeing a private endo now though.
She said my B12 was in range so again, no futher tests. I did pay for a few injections myself though but haven't had any lately.
I haven't but I only because I didn't think I have positive antibodies? My recent results were low?
Apologies, having re read an old post, I can see your antibodies are negative. It’s definitely worth completing your member profile to update others on your thyroid journey’ .
You really do need to address your low B12. Can you see another GP who is more supportive/ knowledgeable about both low B12 and thyroid health?
You could complete a new post asking for an endo recommendation in your area. Admin will close this new post to replies, as discussion of practitioners can only be via private message.
Check with a few private hospitals, these days the need for a private referral has gone for a lot of things eg I saw a private cardio and had an MRI on my pituitary gland.
Another thought is to get a thyroid scan. I’ve had consistently low antibodies on tests too, but recently discovered my thyroid is a fraction of the size it should be. I say this because my GPs for years doubted that I “really” had a thyroid problem, despite an endocrinologist diagnosing it. Knowing I have a shrunken thyroid hasn’t changed my treatment but boy has it helped me get clearer and more assertive about dealing with the kind of medical bullshit that you too have had to withstand.
You're in the UK? Seriously why don't you write a formal letter of complaint? Or can you switch to another GP. Surely with those levels your doctor cannot refuse to medicate.
Oh they can! My T4 is bottom of the range and once dropped under, the requested an 8 week retest and it went up, my B12 has been steadily dropping for several years and I have B12 deficiency on my medical record but no treatment ever offered or suggested. My ferritin levels, highest was once over 600 in a range where the top is 150, marked as abnormal on the results never once mentioned, it hasn't been within range for years despite always being abnormal, when I mentioned it once the GP agreed to a blood test to rule out haemochromatosis, the lab refused to do it as there was no mention of any familial links. GP just shrugged it off. They operate by "practice guidelines" and at whatever level their knowledge base is. Some are better than others, few are optimal.
Get 50mcg levothyroxine prescribed by different (more knowledgeable) GP …..or via endocrinologist
Retest 6-8 weeks after each dose increase
ALWAYS test early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
You will need several further increases in Levo over coming months
Guidelines of dose Levo by weight
approx how much do you weigh in kilo
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
TSH should be under 2 as an absolute maximum when on levothyroxine
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
If GP is unhelpful
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
Thank you. I'm going to have to retest though I think as tested positive for covid later the same day I'd done my bloods......know that may have impacted everything.
I agree Sungwell. Your post Beth made me seethe on your behalf! What an arrogant and ignorant doctor you have. Write to the practice manager and tell them on what grounds can medication be withdrawn based on these results AND to not be listened to. At least you have another route - private medicine to get what you need. The NHS is just not fit for purpose for many us .
Makes me wonder whether the fact the NHS is free is part of the problem in our increasingly transactional/capitalist economy. Many doctors don’t feel motivated or respect you unless you’re paying them. When I have been forced to go private I’ve been amazed how much more respectful they are when I’m handing over my credit card.
But we are paying them via our taxes so don’t put up with this GP’s arrogance. 😊
Some great advice here. I would add, don't add in any t3 meds for now. Just the levothyroxine. Gradually bring the dose up as suggested, and live with it for a couple of months before retesting. You might well find you don't need the t3. And if you turn out to be a poor t4 to t3 converter, its always an option down the line.
this is EXACTLY what I did yesterday - take my dose about an hour before my blood tests. What a fool I felt (not saying that you are one - I should have known as have read here before many times not to do this).
Your GPs response is so typical of ignorance repeated over+over on this forum. Think that's why we pay for private blood tests and private Endos. Personally, it's the only way forward. All I can say is, at the end of the day,with support from such knowledgeable people here, you can have your best life, as the medical profession (GPs,+Endos) seem either ignorant or couldn't care less! You have to do what is best for you! Trust you get all the help you need - with or without your GPs support!!👍
That's the ridiculous opposite of the GP who saw my very low TSH and promptly started me on Levothyroxine! Members here may remember. I sacked that GP. I'm hoping, now, to face my new GP with the suggestion that I may be subclinically hyperthyroid due to symptoms that are being treated individually. My thyroid is nodular but it has been that way for many years. Anway, Beth, don't stand for this treatment!
It just worries me that they have so little, or outdated, knowledge on thyroid issues. My GP almost scoffed when I said I had researched things for myself...so bloody arrogant....she even asked me what I did for a living as if to judge my intelligence!!!
It worries me too. I had accepted her prescription, jogged down to the pharmacy and picked it up, next morning (or whenever it was) took my dose and then came on HU and read about it and engaged with some of the luminaries here who said she was a fool. I changed my GP (not just because of this) and my new doctor said he couldn't understand why she had done that.
So reading what you have written since makes my blood boil. Thank goodness not all doctors are so arrogant, and not all are against us doing our own research, but until they know you, they all seem to judge our intelligence. I have seen the same doctor three times in A & E and each time he has said I haven't any more compression fractures than I had on my last visit, and each time, the x-ray proved him wrong. He was able to tell me exactly which of my vertebrae had "gone", so where is the intelligence of a man who can't count to seven? Not to mention the so-called nurses who ask me what's wrong, when they have just (without warning) lowered the back rest on the trolley. Any patient will cry out, even without a new back inujry when that is done. Well, that's the NHS but the doctors we are talking about are the outdated ones. I don't know yet whether I have a thyroid problem, but I've been on here long enough to know that if I have, I will have to do my own research and deliver my own care. Your GP should do the same. HU should be prescribed reading for doctors of all sorts.
Yes, it's kind of "Nothing wrong with your back" "But it feels like it did the last time I got a compression fracture" "You haven't got a new compression fracture". So why am I in so much pain?" "Maybe you've sprained a muscle".
It seems like it, but I just think he couldn't read the x-rays. The first time I met him, he gave me oramorph but he didn't give me enough to last out my holiday (which I told him about) which resulted in my holiday being ruined in several ways, not least of which was financial due to hospital costs abroad. Lazy young doctors. It isn't as if he hasn't seen the error of his ways because each time, after the x-rays, he has reeled off all the fractures in my back, and there's a new one, which I knew anyway. We're not all stupid!
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Back to square one?
Back to square one ….
Back to square one, I miss ndt so much.. 
Back to square one due to brand
Question again re new results. Back to square one.
