Hi, I've been on 50mcg levo for 15 weeks now and my latest GP bloods are:
Thyroid peroxidase antibodies (TPOAb) 166 iu/mL [0.0 - 34.0] (Down from 240 before meds)
TSH level 4.64 mIU/L [0.27 - 4.2] (Down from 8.47 before meds)
FT4 level 13.9 pmol/L [12.0 - 22.0] (Up from 10.1 before meds).
The outcome was, no action needed.
I will do a more comprehensive test from one of the providers recommended on here, but need to wait for another 3.5 weeks until I've been back on Almus brand for 6 weeks.
However I have mainly felt bad - tired, low mood, with brief periods of feeling great (it's nice to remember I'm still in there somewhere). However I'd like to be able to feel great more than bad and wonder whether I should start to increase my dose?
Any advice appreciated, thank you.
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tge1230
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Yes! You really need to push them to increase your dose as you are still hypo and on a child's dose, have you been adding some methylfolate to improve your levels? Don't think you've had your Vit D checked?
Hi, no I haven't checked Vit D yet - I'm waiting 3 1/2 weeks to do my next private test and will get B12, Folate, Ferritin and FT3 too. What would an optimal B12, Folate and Ferritin level be? Does the methylfolate only boost folate, or ferritin too and can you recommend a good supplier? Thank you.
Shocking really that they haven't tested your B12, folate and ferritin... I'd push for the increase and request these tests from them, no point doing a full thyroid panel when you are so under-replaced, your recent result showing you need to add 25mcg a day minimum and will likely need more
B12 aim for top of range, some like it above
Folate above 50% range ( ranges vary between labs) not much between brands I don't think? Get your folate up then switch to a B complex to support all B's
Ferritin 100 but you'd need a full iron panel to see where your levels are before thinking of supplementing
I think you would be very well within your rights to ask for a second gp opinion, especially if you describe symptoms. My gp always suggests more even when I’m around 2.5 Tsh.
an extra 25 per week should help bring down your around 1 ish. Ideally you want to be 1 or just below that. T4 upper ranges, around 19-20
ye gods , "no action needed "... utter bukum (gp needs to go to specsavers , or learn to read)
current NHS guidelines clearly state that the aim of treatment is to get TSH WITHIN the reference range , yours is not....., so yes , they should absolutely increase your dose ,,, and they should be doing this automatically , you shouldn't even be having to ask :
"1.4 Follow-up and monitoring of primary hypothyroidism
Tests for follow-up and monitoring of primary hypothyroidism
1.4.1
Aim to maintain TSH levels within the reference range when treating primary hypothyroidism with levothyroxine. If symptoms persist, consider adjusting the dose of levothyroxine further to achieve optimal wellbeing, but avoid using doses that cause TSH suppression or thyrotoxicosis.
1.4.2
Be aware that the TSH level can take up to 6 months to return to the reference range for people who had a very high TSH level before starting treatment with levothyroxine or a prolonged period of untreated hypothyroidism. Take this into account when adjusting the dose of levothyroxine.
Adults
1.4.3
For adults who are taking levothyroxine for primary hypothyroidism, consider measuring TSH every 3 months until the level has stabilised (2 similar measurements within the reference range 3 months apart), and then once a year.
1.4.4
Consider measuring FT4 as well as TSH for adults who continue to have symptoms of hypothyroidism after starting levothyroxine."
these may come in useful , this one contains simple anecdotes (in case GP is simple ):
simple explanation of why 'TSH anywhere in range' is not the same as 'optimal for the individual ' : healthunlocked.com/thyroidu... -the-shoe-size-analogy.
once your GP has mastered the basics of 'reading', try getting then to read some of these :
Thank you. I have put a note on my repeat prescription saying I want to up my dose and requesting they give me extra tablets so I can do so. Fingers crossed?!
Politely request/insist that GP test folate, B12, vitamin D and full iron panel including ferritin and thyroid antibodies for autoimmune thyroid disease if not been tested yet
Hi, I've been on 50mcg levo for 15 weeks now
Bloods could/should have been retested at 6-8 weeks after starting on 50mcg
Retest again in 2-3 months after being on 75mcg daily
Recommended that all thyroid blood tests 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)
Hi, it's Almus/Accord who don't supply 25 mcg so I have asked for a larger amount of 50mcg to enable me to cut them in half. When I can muster the energy I will compose an email to the surgery explaining myself and requesting the tests you suggest. I'd like to find sources of evidence for the need for iron and vitamin monitoring so they can't fob me off!
Thanks very much, rotten just about sums it up! As of today I'm taking 1.5 of my 50mcg tablets and have requested a larger quantity of my next prescription to cover the increase, with an explanatory note. I'll also compose an email to the GP explaining myself and requesting full iron panel along with Vits D, B12, ferritin and folate. You can but try! I know it's a minefield and we're all different, but any advice on how soon you can expect to feel consistently better once on the correct dose? Thanks again.
I like to keep my tsh under 1 to feel my best, might be worth explaining to your doctor how you are feeling and ask if you can at least trial a higher dose. I take 100/125 on alternate days.
Alternating doses of levothyroxine (so long as the difference is small - such as 25 micrograms) is usually regarded as fine. Especially when the difference is less than, say, 20 to 25% of total dose.
However, some of us prefer the same dose every day. Not so much a dramatic difference as a continuing feeling of not being on quite the right dose.
And I am very wary of alternating low doses - e.g. 25 and 50, or 50 and 75 - where the percentage change is large.
I wouldn't be surprised if this were highly individual and most who do so notice nothing and are fine.
I have only ever heard of a 50mcg dose used as a transition dose after starting on levothyroxine, for a few weeks maximum. As others have said you need TSH to be around 1 but unfortunately most GP's don't know this. You have had good advice about supplements to support the thyroid medication already and this is well worth introducing these. However, it is essential to increase the levothyroxine levels asap.
I have used 100/125mcg on alternate days and it has worked very well either in the longer term or as a gradual increase or decrease in levothyroxine levels. Do remember that changes in levels of levothyroxine take some time to stabilise and as recommended on this forum wait 6-8 weeks to retest levels.
I was diagnosed over 25 years ago with hypothyroidism but the current reluctance to have that diagnosis made until TSH is crazy high leaves me appalled. I have been astounded and disappointed that GP's and even hospital based doctors are still so ill-informed about thyroid issues. I have seen numerous GP's over these years and their level of accurate understanding regarding thyroid issues has not improved. I was told just a few weeks ago that my levothyroxine levels needed reducing based only on a TSH blood test. No doctor should be deciding upon medication doses solely based on TSH results. Make sure you get T3 blood test too, as already stated. Good luck and take evidence with you to the next appointment with the GP.
Thank you. Can you suggest reliable evidence for me to arm myself with, in terms of TSH/FT4/FT3, the vitamin panel and iron panel by any chance? My Nov 2024 FBC results looked to me to show anemia - low hb and low RBC - but no action was deemed necessary. I do wonder whether my fatigue is anemia or insufficient levo. If there is a reference somewhere explaining why iron and vitamin levels need to be higher in hypothyroid people that would be useful. Thanks for your input.
I believe there are notes available on this forum specifically for doctors. Perhaps you could reply to an Administrator and confirm if that is the case and how to locate them.
Your best bet is to post your blood test results making sure you include the reference ranges and seek advice upon these results. From what you have written it is clear that you have low thyroxine levels and this ought to be resolved asap. You are above the reference range for TSH and I cannot understand the reason your GP is ignoring that fact. My TSH was lower than yours and I could barely get out of bed when I was diagnosed as hypothyroid.
You may also have low iron too as it is not an either or situation. Lots of us have both, including me. Some time ago one of my iron test results showed levels just within the bottom end of the reference range and the comment was, satisfactory- no action needed. Ridiculous! As I said earlier some/most of the doctors do not understand. If you post your results soon asking for comments then you will have that information /comments to discuss with the GP.
No Action needed i would change Drs seems they have no idea about thyroid issues etc iam on 75mcg of levothyroxine and TSH around 2 iam pushing for a higher dose as it needs to be below 1 I believe get back at your Dr and quote NICE guidelines.
Good luck these Drs are in the dark about thyroid etc all they do is say its within range etc no thought sometimes for how the patient is feeling iam sure they think treatment is helping the thyroid and not replacing the hormones that are not been produced properly 😉
Hello, I tested for hashi's and was feeling the same until I changed to a animal based diet. I always ate low fat protein, nuts, beans, avocado, olive oil, etc. what I was told was healthy. I dried out my body and brain began having ringing int he ears, high bp, ezcema etc. I was about to go get a shot for my skin issues when my husband talked me into going carnivore for a bit. He listened to Jordan Peterson and MIkayla Peterson on Joe Rogan. I knew this would not work but he will not eat salads for me so I figured if I tried it I could get him to eat salads after I saw it did not work and went to dr for the shot. IT WORKED! MY skin quite itching in 6 days of being off carbs, veggies, etc. The others took about a month to two because I began slowly so not to upset my gut more. I ate bacon and eggs for breakfast for two weeks then added steak or hamburgers and butter for lunch a few weeks and then made more at lunch to have for dinner a couple weeks later. I removed other stuff veggies slowly also as not to have oxalate dumping. The process took me about 3 months and I messed up some but did my best and I am 56 and have never had more energy without caffeine in my life since my 30's. Everything is being relieved. It is a total elimination diet. I had planned to do it a few months but feel so well I will continue. I read Paul Saldino's and Shawn Baker's books first because I needed a little more convincing. Good luck with your journey!
Hello, I loved and ate all those before but no, now I just consume 90% animal based. Once in awhile I'll have a cup of decaf coffee with Baileys or an ice cream -gluten free-their are carnivore ice cream I have made also and it's good. I loved salads and really thought I'd miss them and go back. At work admin will get us Panera Bread once in awhile and I loved the Fuji Apple Salad. I did get it once after changing the way I eat and was amazed out how unsatisfying it was. I was so hungry after. I really believe I have never been satiated eating low fat and veggies.
I was also always anemic (low iron) since my 20's with low vitamin D and B vitamins. Those are all good now. It's crazy and amazing how good I feel. I always thought I was eating healthy. It makes me mad and sad that we are told to eat certain things and no fat--women need so much fat for our hormones. I truly know how it sounds. It was not the placebo affect with me because I did not think it would help.
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