Hi everyone , I have just joined this forum so this is my first post.
I have Acquired Hypothyroid and currently take 75 mcg Levothyroxine. For a long time now have been symptomatic of under treatment for example weight gain despite calorie deficit , muscle aches , pain in tendons of my feet and joints. Water retention in arms and legs. Depression which is horrendous ( other causes too but this making it worse) also I’m always cold
My recent blood tests were TSH 2.8 and T4 10.8 .
GP refuses to up my dose of Levothyroxine too 100 mcg despite how awful I am feeling because my bloods are within the range.
Could anyone advise me as how best to word a message to GP or how to approach this please ?
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777Frenchie25
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So we can offer better advice, can you tell add ranges (in brackets) for TSH and FT4
was FT3 tested? Any antibody or key vitamin tests (ferritin, folate, vitamins D and B12)?
In the first instance, do ask your GP for the above tests. We don’t recommend supplementing key vitamins without testing first (and sharing results with us).
If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:
Thanks for the reply I will request a trial but its pot luck which GP will respond to my request. I am Vegetarian and as far as I am aware I have always been on the low side of vitamins. Prior to recent blood tests I have sporadically taken vitamin D3 with k2. Other than that no supplements. Just HRT and my other meds.
You need to be supplementing b12. You can't get sufficient accessible b12 from a vegetarian diet alone. Your b12 is low alongside folate. Correcting these will help.
And yes a rise in levothyroxine is also needed. Your GP is mot meant to go on tsh being "in range" when on treatment should be aiming for around 1.
Hi definitely B12 deficient! I’m a vegetarian and my B12 was 220 so likely deficient! (NICE guidlines) Have a read of them B12 deficiency and when you go to a GP take a copy or some notes. B complex is good as it has all the B vits you may need and also folate which you need as well. 🤩 good luck
TSH should always be under 2, with most members here reporting they feel best when it falls closer to/ under 1. FT4 is low in the range, so an increase in Levo would be beneficial. However, I would advise testing FT3 in addition to TSH and FT4, for a complete picture of your thyroid health.
It’s essential that key nutrients - Vitamin D, Vitamin B12, Folate and Ferritin are at optimal levels to support thyroid health. Improving these should be your key focus.
I like my levels to be:
Vitamin D (100-150nmol/L)
Vitamin B12 (Total B12 at top of range or for Active B12 100 or above)
Folate (at least half way through range)
Ferritin (half way through range) Although some point to 90-110ug as optimal.
According to guidelines issued by NICE, 30ug or less is deficient. As such, I would ask GP for a full iron panel test with yours at 11ug. If you choose to take an iron supplement, take alongside Vitamin C (eg orange juice) as this aids absorption. Also look to increase iron rich foods in your diet, eg tips on dailyiron.net
I improved my key vitamins by following advice from knowledgeable members, so will tag SlowDragon as her links are invaluable.
Thanks for all the info . I am very concerned that the GP still won’t increase the dose. I have been trying for a year. I never get the same GP either . I’m tempted to cut up a dose of 75 and take an extra bit with the 75 tablet. I will request a trial of dosage increase in the hope that they will agree.
Yes do, but also you must increase your vitamins and minerals. Yours are all way too low. You can't feel well like that. Ask here for advice re which supplements are best because just going to Boots or Holland & Barrett will not help anything for you. Experience has sorted out the best of the things we need here.
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.
It’s possible to have low ferritin but high iron
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
If taking any iron supplements stop 3-5 days before testing
Eating iron rich foods like liver or liver pate once a week. Increase the amount of red meat you eat, other foods include 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.
once settled on vitamin D and magnesium look at improving low B12 next
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
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need 2 per day and/or may need separate methyl folate couple 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 3-5 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 if last test result serum B12 was below 500 or active B12 (private test) under 70
What do you mean by “acquired hypothyroidism “ ……as a result of other treatments?
TSH over 2 is too high for someone on levothyroxine
Roughly where in U.K. are you
Could you see a thyroid specialist endocrinologist to overrule your GP
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 so that might eventually transfer to NHS
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 somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
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).
The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency.
Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3
Apologies to everyone if I’m slow to respond it’s a lot of info to digest. I am grateful for such insightful and supportive posts from all of you . Forgive me if I have missed a post.
As you've already said there's a lot of information in the replies you've already received. Take your time to read through them.
I know from personal experience how drained I felt with low ferritin levels; my body felt so heavy and legs felt like I was walking through thick sludge. Also overwhelming tiredness after any exertion.
I've still a way to go with supplementing but even with a slight improvement in my ferritin levels I feel so much better.
I sympathise, my TSH results have never reflected how poorly I've felt. It's been trial and error (under medical supervision) to get my medication right.
My husband came with me to the GP and said, "This isn't working, I want my wife back, isn't it time you referred her to endocrinology?"
Perhaps take an advocate with you to your next GP appointment.
You can explain that you understand the risk of stroke and heart attack from taking a higher dose but would like to try it, under medical supervision, as currently you're life is miserable. Say that you need to work and you've got bills to pay, you can't exercise as you feel so dreadful and this is also having an impact on your health, ask for a referral and get your life back.
I hope I've reaffirmed what you're already thinking. It's hard work when you're feeling poorly but have courage and you'll get there in the end.
You have a lot of info on here already but, as far as doctors are concerned, when I was in the same situation as you and they refused to increase my meds I would then question “what next?” If the doctor doesn’t think my fatigue etc is due to low meds then what will they investigate? Could I be referred for cancer screening, cardiology testing, etc etc. This conversation always resulted in the doctor saying, ok let’s try increasing the meds first and see if that helps! Don’t leave the consultation until you know what they are prepared to do next
Based on NICE recommendations for prescribing by Kilo of body weight I should be on 150mg yet I am on 75mg.
I just had a phone call with the GP who refused to initiate a trial dosage increase with review in 6 weeks because at 2.9 I am well within range. I tried explaining everything but he wouldn’t listen. Said that I would then go hyperthyroid which I said was rubbish. Then he said if I over medicate myself he will stop prescribing my Levothyroxine. Is he allowed to threaten me with stopping a vital medication ?😭
well .... 'if you overmedicate yourself' ... then certainly a GP would be correct to reduce your prescription dose to a lower dose that didn't overmedicate you . they must not overprescribe thyroid hormones , that would be harmful and would get them in trouble with the GMC or whatever it's called nowadays.
but if for example you / or they tried a perfectly reasonable smallish dose increase eg. 87.5mcg, and if that lowered your TSH to somewhere between 0.38 (bottom of their lab range) and 1 ish ..and as long as T4 remained within range , and as long as you showed no symptoms of overmedication ..... then you / they would clearly NOT have 'overmedicated you', so in those circumstances there would be no grounds to even reduce dose , let alone stop prescribing it altogether .
if you increased dose to a level that did take your TSH below range and /or T4 over range , then that is a more difficult argument to make , and yes , under those circumstances they can and often do reduce the prescribed dose whether you like it or not .
'reducing dose' (with or without your 'agreement') is an entirely different matter to 'refusing to prescribe any at all' .
if he suggests/ infers this again , ask him to clarify it in writing so you are clear exactly what he means ..... because assuming you were correctly diagnosed as hypothyroid in the first place , with pre levo blood test evidence to back this up , then he would be on very shaky ground to do that . There is a good reason why levothyroxine is usually for life and why prescriptions for it are free .... it is to prevent patients ending up in hospital with myxoedema coma., due to untreated hypothyroidism.
Yes he inferred to me that if I were to up my dose myself that he would stop prescribing it altogether. I am diagnosed Hypothyroid so he is wrong to infer this. Also I understand as you state that if a slight increase in dose pushed me outside of range then that would warrant a decrease. I do not understand why they refuse to even try.
id write to him, (so it will appear on your notes) asking something like:
"Please clarify your reasons for your recent comment in writing , you suggested that if i were to increase my dose of levo , you would stop prescribing it .
i have no wish to be overmedicated , and if that were to happen with a small dose increase , then i do understand why you would reduce the prescribed dose in that circumstance .
however , if i tried an increase dose of 87.5mcg and my TSH / fT4 levels remained within reference range, i had no symptoms of overmedication , and if i felt better on that dose than i do on 75mcg , do you then intend stopping my prescription altogether ? ..... and if so , on what grounds ? "
Surely it is possible for them to clinically assess whether you are 'overmedicated' after even a slight increase by ordering a full thyroid panel and vitamins. Then they would KNOW by clinical evidence rather than guessing. It makes me mad that GP's can be so arbitrary with their generalised assertions when it's not them unable to work/live with this condition. And not to know that over 2 is undertreated when on levo is a dereliction of their duty to keep abreast of current information. When did THAT doc last do any CPD?
I see that you have been given a slight increase. If the GP won't bother to order proper checks to test outcomes, you can do it yourself with Medichecks Advanced Thyroid test in six weeks' time and post the results on here. If the evidence is clear to the wise heads of the forum, you can visit your GP armed with clinical evidence rather than just symptoms. I did exactly that and my GP did not then argue with my request, having done so previously. If they claim to go with the science...give them the science!
Exactly it’s like they aren’t even prepared to try for the best outcome. I said to the first Dr this morning that I hoped he never has to live with this disease.
Register at a new Doctors practice. My life was like yours for 2 years. Thought I was going to die. Once you are on the right dose and your Iron/B12 are optimal you will feel so much better. Big Hugs xxx
re. 'register at a new practice' ~ i suspect that increasing numbers of people in UK no longer have that option available to them .
where i live , the 5 or 6 previous surgeries in the town are now one large group practice, using several buildings around the town , with doctors and patients using all of them for various appointments , and the boundaries of the nearest 'other' practice don't cover patients in my area , so i can't change practice unless i move house .... or pretend to.
i can, in theory, see any one of about 26 doctors .... but to see a specific one i may have to wait many many weeks for an appt .. or see 'whoever i was given' if i had to have something dealt with sooner.
Senior partner rang me and has agreed I can increase my dose by 25 mg to make 100mg. For a trial period then retest. He said if i go out of range and my symptoms don’t improve he will stop the increase but if im still in range fair enough. He also said I need Iron so to supplement with that and but c for absorption as lots of people have said on here. Thanks for everyone’s support. I hope that I will start to improve now.
I must concur with all of the advice on vitamins. Everything works better for me (including levo/lio) when mine are in good shape. If you are an unlucky one (like me) who has trouble absorbing them, you can buy pre-methylated ones which work much better so you take less time to feel good. I spent many years taking vitamins - and feeling rubbish - without realising I couldn't absorb them!
Hi welcome i had the same problem all the way from 25mcg in 2022 had to keep at my Dr quoting NICE guidelines etc and my weight iam now on 100mcg and feel tons better touch wood some DRs are only bothered about ranges but in my experience and others experiences they are totally inadequate keep at your Dr good luck .
Thanks it’s so frustrating. I said to him do you actually think I want to over medicate myself more than I need to ? Why would I I just want to feel well. Fingers crossed it helps me or I shall be back to square one.
Think the problem is GPs don't know enough about thyroid problems they seem to be reluctant to prescribe levothyroxine etc when they do they seem to think that's the end of the problem I've had to request my repeat blood tests they have forgotten them took me nearly a year of blood test to diagnose me all he kept saying was seems your thyroid is struggling etc borderline line and so on glad I found this forum its helped me to voice my opinions and be heard because we all seem to have or had the same problems .
At the start of my hypothyroidism journey, I barely had the strength to get to the GP, never mind argue with them. Some years down the line, I know from personal experience and the good folks of this forum that self advocation is the only way forward. It was the first time I had encountered this problem in NHS and I was shocked that one had to battle for medication that had been clinically proven as needed. Would they refuse a cardiac patient their meds...or a diabetic? We could be either or both of those down the line if the thyroid is undermedicated long enough. Such a short sighted approach...
I liked the earlier suggestion of taking someone who lives with you to attest that quality of life is very poor - and also witness/maybe note for complaint the dismissive attitude. GP's seem less liable to do this if it is observed by more than one person and it's all too easy to be labelled 'difficult' or 'confused' when one is on one's knees with undermedicated hypothyroidism.
Get some good vits in, stay strong and listen to the administrators on here. They know their stuff and they are SO MUCH more helpful than many doctors (and even endo's) that I have encountered. Let their strength also be your armour. Very best of luck.x
Spot on which is why I said to the first GP I hope you never have to live like this and told him he was keeping me sick by denying me the opportunity to improve my symptoms.
i've often wished we could take authority over the accelerator in the GP's car , just the same as they like do with our thyroid hormone doses,
ie remotely , and without any consideration of what they are seeing out of their car window ,
i think perhaps they might 'get it' quite quickly if we just decide to take our foot off the gas when they are going up a big hill towing a caravan ,,, see how they like them apples .
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GP says mt TSH is too low.
Low dose Levothyroxine
GP won't increase dose
gp agreed to increase dose of thyroxine
