I have been on 25mcg of Levothyroxine for the past 8 weeks. I got my recent TSH and T4 results. Unfortunately my GP didn't do a full thyroid panel
TSH 14th January 6.02mIU/L
FT4 14th January 118nmol/L
Range (8-16)
TSH 29th March 3.79mIU/L
Range (0.38-5.3)
FT4 29th March 12.1 pmol/L
Anyway it was a fight to get started on Levothyroxine with my initial results but I have now asked for an increase to 50mcg as I know the dose I am on is too low. She responded today. She wants me to alternate, 25mcg one day and 50mcg the next and so on. Is there truth to what she says? I actually really like my GP and she usually has confidence in my requests, but I feel she is brushing this off
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SummerJessica
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GP said “COVID is to blame” lol bu**s**t and to add to that you can’t call the GP surgery anymore cos of COVID ... now if you need GP you have go online send a request & they will get back to you in 48 hours
Is this just your surgery practice? Or Everywhere in the country? I went to a random walk-in clinic in the nearby town and got my blood and vitamins tested while my own surgery kept telling me those covid-scare stories. Im in Ireland though.
Im sorry you were let down by your GPs. Looks like they need to be ditched. Any chance of changing them? Even if it'll involve travelling a bit? There are good doctors out there too 😉. Im doing very well. Moved my focus from GPs to my mental wellbeing: doing yoga, meditation, mindfulness, sleeping,eating well, stress management. Monitoring my bloods every possible way, reducing carbimazole. I won't write more as it is off the topic of this thread.
Have you missed out a decimal point there, somewhere? Should it be 11.8? If it were 118, with that range, you would be dead, I should think.
Is there truth to what she says?
Difficult to say. I don't really know what she's talking about - and I suspect she doesn't, either! Sounds as if she thinks that taking levo tops up your natural hormone production. It doesn't. It replaces it. And, even if it did top it up, the balance would be destroyed because the thyroid makes both T4 (levo) and T3. You are only taking T4. So, where's the balance in that? I get the feeling she's completely out of her depth. Not brushing it off, exactly, just fudging her way round it.
As for 'please try and optimise your health and well-being', how does she expect you to do that if you're hypo? Your health and well-being depend on your hormones - and there are many, many of them - and they will all be a bit skewed if your thyroid isn't producing the correct amount of thyroid hormone. I think she needs to do a bit of reading up on the thyroid.
Sorry the range 8-16 was for my GP practice recent blood tests! I am on Vitamin D but I had hoped they would test my iron and Vit D again as I am often very low on both! Don't know how I'm supposed to optimise my health if I can't get a full picture :/
No, I wasn't talking about the range. I was talking about the result: 118. That would be incredibly high - higher probably than if you had Graves! You must have missed a decimal point. It's more likely to be 11.8 than 118.
See different GP and get dose levothyroxine increased to 50mcg per day
guidelines on dose levothyroxine by weight
Even if we frequently don’t start on full replacement dose, 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
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
Essential to test vitamin D, folate, ferritin and B12 plus thyroid antibodies as well
What vitamin supplements are you currently taking
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
I did the last blood test fasted with nothing but water at 9.15am. I currently only take Vitamin D on a higher dose after my loading dose finished. I am not on Lansoprazole anymore. I did however take my Levothyroxine in the morning prior to my test It looks like she has prescribed the 50mcg tablets so I will pick that up. I took 50mcg today and am considering just continuing with the 50mcg and then getting a private blood test.
Many people find Levothyroxine brands are not interchangeable.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Teva, Aristo and Glenmark are the only lactose free tablets
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but doesn’t make 25mcg tablets
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
Only taking Vitamin D and the GP hasn't tested any or my vitamin levels in a while. I am usually low on iron, was supplemented last year for 3 months and I seem to go through phases of being severely deficient. When I got a DVT (out of nowhere) I was only 33 and I was apparently severely iron deficient at that time.
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial..This can help keep all B vitamins in balance and will help improve B12 levels too
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B is another option that contain folate, but is large capsule
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
With B12 result still below 500, recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
Low iron and/or low ferritin frequently linked to hair loss
Heavy periods are classic sign of being hypothyroid and will frequently lead to low iron and ferritin
My ferritin has always been lower than 50 when tested I think. I do have hair loss/breakage constantly, but I have a lot of hair and it seems to shed evenly! No bald patches! I really wanted my ferritin tested as it is consistently at the lower end of the scale.
Actually I think your GP is being reasonable and empathetic. Your levels appear to be going in the right direction and yes levothyroxine can/does top up deficient thyroidal production. It would be more than interesting to know your free t3 levels to really get a handle on on it. The GP is remarkably sensitive to the potential issues of disrupting endocrine balance and yet is also facilitating your trial of replacement thyroid toward feeling better. If she were my GP I’d be pretty happy with her attitude. And care. She really should do the ft3 though Onward from needing it for initial diagnosis you also need the ft3 levels to see what happens as you increase ft4.
Yes I had hoped when I asked for a FULL thyroid panel they would do just that, but clearly not it's annoying as they want to wait a further 6 weeks to test usually so I think I will go private again.
My GP blames labs overriding her requests to test full panel and testing only TSH and T4FREE. Well whether it's true or not.... looks like they are allowed to test it that many amount of times by the protocol... Do you have any walk in clinics/ GP practices in the area? I found one random one in the town next to mine ( in Ireland) who 'run ' blood clinic. They did full panel and all vitamins no problem ( the same lab as my GP!) Otherwise private companies are there to avail.I find your doctors approach interesting. Indeed alternative approaches insist that substituting with synthetic hormones for life doesn't cure the problem. One need to work on their phycosomatic triggers, alternate diet ( under specialist's supervision,) work on reducing stress at work and in family, sleep well, ballance in every area of life as the evidence of regenerative functions of thyroid ( and other organs) exist once supported and main triggers are aimed at.
I wish you GP explained and advised how exactly you should increase your health and life wellbeing from a professional point of view or recommend which direction / specialist to go to.
If, by "we wouldn't want to 'stop' your...." she means she is concerned about 'switching off' your own thyroid hormone production, well as long as your TSH is around 1 ish , why would it ?
It doesn't 'stop it' in healthy people with a TSH of 1 ish....so why would TSH of 1 ish stop it in you ?
Ask her to explain HOW exactly she thinks a higher dose of Levo will 'stop ' your 'pathway'.
Once TSH goes very low (maybe below 0.5 ? guessing a bit ) then there is a point to discuss about the effect of TSH on the deiodinases, which are what turns T4 into T3 in your cells , but frankly i'd be astonished if a GP had the faintest idea what a deiodinase was,
But if you learn about them , you will be able to pick her argument to pieces (you can do it gently if you like her )
Are you older than 65 ? they are more cautious then , but probably without much evidence why,
25/50/25 is an extremely small amount, and your 'natural well balanced endocrine pathway ' has noticed how small it is and is doing what it should and telling her it wants some more please.
That is the main job of TSH , to notice the low T4 levels, and to rise to ask for more.
It has risen from a healthy well balanced 1 ish and it's still too high.
Ask for enough Levothyroxine to get TSH down to 1 ish for starters, and then see how you feel.
Of course, the more important number is the fT4 level which is still pretty rubbish, and also clearly shows there is room for more Levo.
Is [8-16] correct for the fT4 range , it seems unusually narrow /low ?
but it's not unheard of, a few labs use one similar. [7.9-14]
I'm only 39 🤣 I did say at the time that 25mcg was really low but I guess I'm lucky I got started on it at all as they have not paid attention to my thyroid complaints ever! The FT4 range is correct for my practice. But they didn't test my FT3 and I thought they were going to along with my vitamin levels, especially as I was found to be severely deficient last time.
So , her instructions are to alternate 25/50 day giving daily dose of 37.5 and retest in 6 weeks.
(If you take 50 /day you'll possibly run out of tablets. and risk them not providing more before next prescription is due).
If you were to decide to ignore that and take 50 /day , and test privately to get T3 done too, you would still need to wait 6 weeks before testing , because TSH can take a while to catch up and stabilise.
So it sound's like the low dose is because they weren't convinced you need any at all, but have decided to give it a go.
I'd be wary of increasing dose against instructions at this point if you want to keep your GP 'on side'
Even though it's a long and tedious road , it's very likely that when tested on 37.5mcg /day your TSH would still be well within the reference range, and probably still well above 1 , and if it is then you have a perfect argument for another increase.
But... If you increase dose on your own , and TSH was to go lower than they are comfortable with they may well insist on a reduction, or even remove it entirely.
I just picked up a 25mcg prescription last week and I see she has prescribed 50mcg now so if I pick that up also I would have enough for 50mcg a day. However I see your point. I don't think any of the GPs I've seen think I have a thyroid problem and I'm sure they initially trialled it as a punt! I don't know how to convince them that even at the TSH level I have now, which in their range is normal, isn't normal or optimal (for me) at all. If this increase takes my TSH down then there is likely jo argument for an increase as they are purely looking at the normal range.
aim of levothyroxine treatment is to make the patient feel better, and the dose should be adjusted to maintain the level of thyroid stimulating hormone within the lower half of the reference range, around 0.4 to 2.5 mU/l. If the patient feels perfectly well with a level in the upper half of the reference range, then adjustment is unnecessary
I am 39! I am on higher dose Vitamin D as was on a loading dose for 6 weeks. I do not take Lansoprazole anymore, stopped that in January and I don't appear to be having the stomach problems I was having in December.I have PCOS and a benign thyroid lump. I also have Raynauds. I suffer restless legs and anxiety which has unfortunately worsened over lockdown!
I am thinking to take the increased dose and privately pay for bloods like last time as it seems so difficult to get my GP to test what I want. For either of our arguments I need a full picture. I agree that she can't say my thyroid is balanced even with the lower results as we can't see everything if we are only testing 2 things! I did hope my vitamin levels were being checked alongside, especially as my Vitamin D was so deficient!
I'm currently on 1000IU of Vitamin D3. Not sure what my dose was on the 6 weeks script. I did wonder about taking magnesium. I also get a lot of muscle cramps and apparently (my massage therapist) says my muscles are always very tight. She said she wonders how I walk around like that 🤣 I know I constantly tense but could this be a symptom of low Magnesium?
Yes tight muscles and cramp common symptoms of needing magnesium
Recommend Igennus triple magnesium (large capsules....personally I tip out and swallow powder direct). Full dose 3 per day(one after each meal) ...probably 2 per day enough. Magnesium should be minimum of 4 hours away from levothyroxine
Alternatively Calm vitality magnesium powder is cheap and easy to use. Best taken afternoon or evening. Good if you suffer from constipation....start on low dose as too much can cause diarrhoea.
1000iu vitamin D is not likely to be anywhere near high enough dose
Suggest you test vitamin D ASAP
Come back with new post once you get results (taking 1-2 weeks to get results at moment)
No point testing magnesium....very unreliable test
Only add one supplement at a time and then wait 2 weeks to assess
Suggest you start magnesium supplements first
After 2 weeks look at adding vitamin B complex
2 weeks after that add separate B12
2 weeks after that consider adding selenium supplement 1-3 times a week
If you take levothyroxine waking
Daily vitamin schedule
After breakfast.....vitamin B complex and mouth spray vitamin D (plus separate B12 when you start taking it)
Igennus magnesium after lunch and dinner
Or alternatively Before bed
Calm vitality magnesium powder
If you take levothyroxine at bedtime (can be more convenient possibly more effective....take calm vitality magnesium powder immediately after dinner (minimum 4 hours before levothyroxine)
Are you on strictly gluten free diet ...can help improve anxiety as it often helps improve gut absorption
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
I think on balance your GP is aiming to do the best she can for you. As you have only been on levo such a short time your latest results aren’t too bad. I suspect going up to 50mcg daily may cause a massive drop in TSH which will alarm your GP.
I appreciate you feel she hasn’t increased sufficiently to achieve your optimal TSH and fT4 levels . Do you have details on your health record to point out to her when your were optimal? If so you could try referring her to those figures. As you have only recently started on levo I suspect not so unfortunately you just telling her saying these are not my optimal levels will not really work with most GPs.
I have found over the years that I do not even have an optimal TSH. Mine jumps around with no relationship to fT4 and fT3 levels. My experience is that it takes as much patience with GPs to get a good relationship as it does to find an optimal dose of thyroid replacement.
It may be different at your surgery but at mine it is impossible to order a different dose of any medication to that stated by the GP. It woukd be impossible for me to increase any dose without the GPs input. Even not collecting sufficient medication raises queries.
The chance of your GP getting a full thyroid panel done is slim to non existent, the labs are very resistant to any testing beyond TSH. My last results were sent following an arrangement between the head of Biochemistry and my GP so that TSH, fT4 and fT3 would all b3 tested. A specially marked up envelope, covering note and even the GP doing the blood draw. Still came back TSH only, the duty biochemist refused to do tests requested. I have seen lab comments so often refusing GP requests I no longer question the doctors for undone labs. My local lab refused TFTs pre surgery in 2019 as there was no change to meds since last routine tests six months previously!
I had hypothyroidism diagnosed nearly sixty years ago and had lots of ups and downs in that time. My current GP is nice but as she stated in a referral to endocrine dept she is “out of my depth “. Currently she is unable to understand that a 72% below reference level of fT4 is anything other than “low”. This despite a result of 80% into range being “dangerously close to hyperthyroidism “. Still I am persevering in the hope I can yet get her trained. It sounds as if your GP is a lot more competent than that. Small consolation for you at this moment I know.
As others have advised get those vitamins tested and work on getting these optimal. You will probably find many problems such as leg issues resolve when addressed properly. GPs are not trained in the value of vitamins and minerals in our diet so we need to take matters into our own hands mostly.
Good luck going forward I hope you find some answers soon.
Thanks I don't know when or if I have ever been optimal. I was diagnosed with PCOS at 21 and even that was a fight. I remember my thyroid was tested then as it was a similar figure. I have had many of these issues for years and they appear to have worsened since having children. I always put hair thinning/loss down to pregnancy and all my other symptoms have always been put down to other things. My vitamin levels have always been on the low side despite eating a varied diet. I was quite surprised my TSH dropped but it has only went back to the level I seem to remain at without the Levothyroxine. I always seem to be around the 4.0 mark and have been now for years.
I have seen dozens of doctors who have felt the need to assure me that a TSH of 4 or more is perfect when taking levo so your GP is being remarkably pro active in my experience. I cannot comment on your feeling that you became more aware of symptoms after pregnancy. My thyroid was destroyed by radiation treatment when I was a child in the early 1950s. I have had a very different experience of hypothyroidism/ pregnancy/ gynae issues than people of your age so virtually no words to offer.
One thing that does not change however is that hypothyroidism often leads to an early menopause. I wasn’t particularly early but done and dusted by my mid forties. For me that was a massive relief. If you have had long term hypothyroidism you may currently have some menopausal issues which like low vitamins mimic may hypothyroidism symptoms. At 39 this may be part of your feeling in need to some help.
I do know many women are now tested as peri menopause so maybe your GP i’ll look into that for you.
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Onward from needing it for initial diagnosis you also need the ft3 levels to see what happens as you increase ft4. 
T3 and T4 results interpretation
Strange blood test results...
Results need further attention, speak to your GP
Blood test results
