Following my previous posts, here’s an update on my blood results. Seven weeks ago, against my wishes, my GP reduced my Levothyroxine from 75mg daily to 75/50mg on alternative days. He felt I had become “hyperthyroid” despite the fact I was feeling the best I’d felt for months. He would only retest my TSH and T4 where the TSH has risen slightly to almost within range but the T4 has reduced significantly. My previous Medichecks results showed that my T3 was capable of increasing so I’m assuming the T4 is converting okay!? I’d followed all guidelines for taking blood tests and they were taken 8.50am in the morning.
I’ve received a text from GP… “I hope you are feeling well. I have reviewed your blood results and they have improved – your TSH is approaching the normal range whereas before it was suppressed with the higher does of thyroxine. I would strongly advise remaining on your current dose of thyroxine and repeat blood tests again in 3 months. If you wish to discuss further, please contact the surgery for an appointment”. My symptoms have steadily worsened over the past weeks and I now feel quite unwell… blurred vision, brain fog, memory problems, constipation and my eyebrows are disappearing! I dread to think how bad I’m going to feel after another 3 months! I'll phone tomorrow for a phone appointment with the hope of increasing the dose back up but suspect he will not agree to this. I will also ask for a referral to an endocrinologist.
Could I also ask a question about weight? Despite feeling so much better on the higher does of Levo, I still couldn't lose any weight even though I'm following a healthy, calorie controlled diet (if anything it's still creeping up).
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Beany101
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You poor thing. It's VERY wrong to dose just according to TSH - but then we know your GP is an idiot because he thinks you can suddenly become "hyper" when he knows you are hypO and is happy to prescribe hypO meds ...
If he looked at your actual thyroid hormones, he would see that free T4 has crashed from a pretty respectable 79% through range [medichecks result] to an utterly feeble 23%. I'm amazed you can get out of bed
Ferritin and B12 look a bit low to me (I accept ferritin was MUCH worse not so long ago) but hopefully eg SeasideSusie will pop up in a bit with her usual words of wisdom about these.
I can't imagine free T3 is doing much when free T4 is so poor. And in my experience you've no chance of losing weight unless both are good. So you really REALLY need to go back to your previous dose - but you knew that yourself, didn't you! You need to say to your GP that our blood results have NOT improved - your actual thyroid hormones are now very poor and as a result you feel very ill. Good luck x
Thank you very much for replying and, yes, this is actually the worse I've felt for a long time. Apart from the brain fog and being unable to focus on anything, I feel and look like I've been pumped up with a bicycle pump. It took months (if not years) for me to get to a place where I was actually feeling well again and I can't believe the decline in such a short space of time.
I can't really afford another set of private blood tests yet but I'm hoping the supplements I'm taking are improving my ferritin, folate, Vit D and B12 levels. I have a phone appointment on Friday with the GP.
First of all, your low FT4 shows you are still hypothyroid, and I guess your free T3 is even lower...!As long as you are hypothyroid, weight loss is virtually impossible.
What do you mean by "calorie controlled diet"? Calorie restriction is a bad idea when hypo. You need a sufficient amount of calories - including healthful fats and healthy carbs - for normal metabolism and T4 to T3 conversion. So, calorie restriction is often a bad idea for hypos.
Also, severe calorie restriction will increase T4 to reverse T3 conversion. Reverse T3 or rT3 is an inactive hormone. When everything is working as it should, the body converts some of the T4 to free T3 and some to rT3. In times of crisis - and calorie restriction can be perceived as a crisis by the body - more rT3 than free T3 is produced in an attempt to lower metabolism and preserve energy. This results in suboptimal free T3 levels which in turn makes you hypothyroid. Remember, free T3 is the truly active hormone and is the most important one to measure! You can have a low or suppressed TSH and high FT4 levels and still be hypothyroid if the body is not converting enough T4 to free T3. We see that all the time here.
Also, in hypothyroidism, not all the weight gained consists of fat but also of fluid as hypothyroidism causes fluid retention.
It is obvious to me that your doctor knows nothing about thyroid disease and treatment, and will only keep you ill. Would it be possible for you to find another doctor? Depending on where you live, members may be able to recommend a good doctor who knows that treating hypothyroidism is about symptom-relief, not lab results!
Thanks so much for your reply. Sorry I shouldn't have said calorie controlled diet... it's not. I've actually been following a nutritional system for just over four years, which consists of meal replacements, healthy balanced meals and also incorporates supported intermittent fasting. I have between 1100 and 1400 calories per day. I initially lost 3 stone and managed to maintain this weight for well over 2 years where my TSH was around 1.28 (not sure of T4 and T3).
At some point between Apr 2019 and Oct 2020 my TSH rose from 1.28 to 2.76 during which time I'd had a hernia repair op, shoulder op, left my fulltime job and we were locked down... all of which probably didn't help my weight, physical activity and stress levels.
From my last Medichecks results I think the T4 appears to be converting to T3 quite well? I'm now on my 4th or 5th GP in the practice... he's new and seemed to listen to what I had to say but then referred decisions back to the senior partner who overruled him/me. I have a phone appointment on Friday... I'll stress how unwell I'm feeling compared to being on the higher dose and request that I'm referred to an endocrinologist. I have the list of private consultants and will consider going down that route if I get no joy with the GP.
I've actually been following a nutritional system for just over four years, which consists of meal replacements,
When you say 'meal replacements', what exactly does that mean? Protein powders that you make into a drink? You should carefully check all the ingredients in these meal replacements, to make sure they don't contain any soy, because soy will make you more hypo, and therefore put on more weight.
Hi greygoose, thanks for replying. I didn't realise soy would have that effect. Yes, they are protein shakes made from undenatured whey protein with a low-glycemic nutritional profile (I make them up with water). I've just checked the ingredient list and, thankfully, they don't contain any soy. They do use lecithin which is derived from soy oil but any soy protein and soy isoflavones have been eliminated through purification. Here are some of the other vitamins and minerals in the shake... I don't suppose you know if any of these should be avoided?
Soy lecithin can have bad effects on a lot of people.
So, the list is nutrients that have been added to the shakes? So, in effect, they are just mult-vits, really. And, multi-vits are never good. What's more, it doesn't tell you how much of each is in it. But, let's have a look:
* Magnesium oxide: One of the cheapest, and least bio-available forms of magnesium. Not recommended.
* Biotin: biotin can falsify blood test results, and depending on how much is in there, should be stopped several days before a blood draw.
* Copper and zinc: these two should be kept balanced, and presumably they've taken account of that fact in the quantities they've added to the shakes. BUT, the problem is, when you are hypo, one of them will probably be low in level, making the other one high. And, you cannot know which is which without getting them both tested. Adding in more of the one that is already high is a very bad idea.
* Potassium Iodide: a form of iodine, is the last thing you want to take! Excess iodine can cause all sorts of problems, and is antithyroid. And you will already be getting roughly between 32 mcg and 49 mcg iodine daily from your levo alone, plus what you get from your food. I take it you do eat some normal food?
* Cyanocobalamin and folic acid: the cheapest and least bio-available forms of B12 and folate.
So, all in all, not something I would be happy consuming, and certainly wouldn't recommend as 'a balanced diet'.
Looking back at your previous post where you posted your November results, your Vit D had improved greatly since your original level of 44. How much D3 are you taking now?
As your folic acid is no longer prescribed, are you taking a B Complex as suggested? Your folate level isn't great - it really needs to be in double figures, and your B12 would be better over 100. A good B Complex as previously suggested would help both these levels.
What are you doing to try and improve your ferritin level?
Hi there, I was taking a Vitamin D 3000 IU daily oral spray but have recently increased it to a D4000 IU spray. I'm taking two sachets of Spatone a day for my ferritin, I'm reluctant to take ferrous sulphate tablets to avoid worsening constipation. I'm also taking a daily food supplement of powdered wholefood greens containing spirulina, kale, spinach, broccoli, chlorella, brussel sprouts (plus more) to improve folate, iron, fibre and vitamins. After reading your link to the article about the difference between folic acid and folate I was conscious to keep the supplement as natural as possible. I'm still having pate once or twice a week and have bought chicken livers... although not plucked up the courage to cook them yet!
I have been taking a B Complex for a while which I thought was very good but have just compared it to the ones you recommended and it's nowhere near as high a strength as probably required so will look at that this afternoon.
I noticed a local aesthetics salon is offering B12 injections... is this something you would recommend? I'm not sure of the cost of this.
I noticed a local aesthetics salon is offering B12 injections... is this something you would recommend?
I'm afraid I don't know anything about these, fortunately B12 is the one thing I've never had a problem with. It might be worth asking on the Pernicious Anaemia forum here on HealthUnlocked
I'd say you weren't really on 75mcg for long enough to see it you were going to loose weigh on that dose. If they hadn't reduced it 7 weeks ago it's possible you might have started to see a difference by now .
Well they can't say you didn't try a lower dose ... you have, for 7 weeks, and it feels rubbish.
Please see my reply to this post (3rd reply down ) healthunlocked.com/thyroidu... feeling-fine-but-tsh-is-low it has links to several posts discussing the issue of low TSH/risk
You will find some of them contain useful information for you to use in your discussion with GP.
Remember to 'keep it simple' for the GP :
~Let them know you have understood and accept the (alleged ) 'risks'
~Let them know you fully understand the signs/symptoms of overmedication ,and you would off course want to reduce dose again if you developed them (fine tremor in fingers . frequent bowel movements , feeling hot and sweaty , faster heart rate etc )
~If you say 'constipation' they might think 'is she undermedicated ?' .
~If you say 'diarrhoea' they will think 'she is already overmedicated' .
~If you say 'palpitations' .. they will interpret it as 'heart going mad due to overmedication'
~If you say 'cold' they might think 'undermedicated ?'
~If you say 'hot' they will think 'overmedicated'
If you say 'hot flush one night a few weeks ago' they will still think 'overmedicated'
So choose your descriptions carefully .
Give then something concrete to write in their notes to justify increasing dose despite TSH. eg ." she could work a full day on 75mcg , but has had to reduce hours again when on 50/75mcg"
Try saying you'd like to "try 75mcg again for 6 months, and then review the situation/bloods once your system has had time to settle down on that dose" ... they might feel more able to agree to 'a trail' than to give permission to keep TSH that low forever. They are worried about taking personal responsibility for that.
Thank you very much for your reply and for the link to the other discussion. I have previously given them copies of various articles including the Dr Toft one but was told they were out of date, although I will quote that particular extract again to this GP who may not be aware of it.
I find when I speak to the GP over the phone I always feel rushed and tend to blurt out loads of things I shouldn't. I'll make a succinct list including the suggestions you've made and try to stick to those points... "keep it simple"! That's a really good idea to give specific examples of how the lower dose has impacted my everyday life. Yes, they said they had a duty of care over me... "it's one thing if I refuse to take medication but another if they are prescribing it against their judgement". Thank you again for your help.
Hi there, they were so much better in November and I was actually starting to feel normal again. From June to September I was taking 50mcg on Mon, Weds and Fri and 75 mcg on Sat, Sun, Tues and Thurs. In September they agreed to increase it to 75mcg every day although my blood wasn't checked as there was a shortage of bottles.
In October, after speaking to the GP about malabsorption of iron and vitamins, I looked into low stomach acid and started taking Apple Cider Vinegar once a day. I asked them to change my prescription so I wouldn't receive the TEVA brand and I also made sure I left 60 mins after my Levo dose before eating or drinking tea/coffee. All or any of these may have made a difference.
Just an update following my telephone call with GP on Friday.
I was prepared with my list of reasons for increasing my Levo dose back up to 75mcg per day. He was adamant that they would not increase the dose as my TSH was going in the right direction and my T4 was still in range. I said that if the T4 (and I’m assuming the T3) continued to drop at this rate they wouldn’t be in range for very long. He offered to retest bloods again in 6 weeks but I told him the lab would probably not test my T4 at that point as my TSH would most definitely be back within range. I let him know how awful I was feeling, with more symptoms reappearing by the day and advised him of the guidance in the various reports and by Dr Toft… it was a very long call and we ended up going in circles. He is being directed by a senior GP at the practice, who he said I’m free to contact for a second opinion and ask to be referred to an endocrinologist. I said “so, as long as my TSH is in range, it doesn’t matter that I feel absolutely terrible, unable to function properly, unable to work and may as well be on the scrapheap at 53… is this how I’m supposed to live for the rest of my life!! He sympathises and asked if there was anything going on at home that might be causing some of the symptoms ie stress! I’ve had a weekend of feeling hopeless and very sorry for myself but now I’m even more determined to get on top of this. The senior GP is not available until 22 Feb and I need to call at 8.30am on that morning for a phone appointment. I’ve been taking the recommended B Complex and hope this will start to improve some of my symptoms, in particular the brain fog.
So sorry that your doctor is so ignorant and despite presenting a good argument you haven't been able to secure an increase in dose. It's exactly this attitude that has caused many members to basically give up with their GPs and self medicate. I wasted far, far too many years in a similar position to you.
I felt so utterly deflated following the call... I can't understand how they can justify not treating the symptoms. And, if they are not due to an underactive thyroid, why are they not looking into possible other causes?
Do those who self-medicate completely avoid having their thyroid blood tests checked by the GP? I'd be worried they would reduce my dose even further.
Do those who self-medicate completely avoid having their thyroid blood tests checked by the GP? I'd be worried they would reduce my dose even further.
I've managed to dodge a few over the years (in fact I did yesterday when I had a "review" with a nurse for another condition) but there comes a time when I do have to have them done. I make sure I know in advance when thyroid is being tested so that I can make sure that I leave the correct amount of time between last dose of Levo and T3 before the test. If I have any surprise tests then I ask what they are testing and if thyroid is included I refuse it.
There used to be an Advanced Nurse Practitioner who was very good and completely understood that my TSH has been suppressed for many years and only looked at FT4 and FT3 and all was well. Unfortunately he has now left and the GPs are TSH obsessed and won't discuss FT4 and FT3 so when the time comes there will be some very difficult conversations. I've had them before, the GP ignores FT4 and FT3 saying that TSH is suppressed, etc, and won't discuss it, so I ignore her. I am lucky in that I still get prescribed the same amount of Levo as I was taking before I added T3 and I don't take the amount I'm prescribed so I have built up a stash so if my prescription dose was reduced I'd be fine for a good while. If I ran short I would self source.
Ignorant doctors not knowing how to treat my hypothyroidism have taken too much away from me, I'll be damned if they are going to make what few years I have left any more miserable.
Sorry for not responding sooner Susie... I've been completely wiped out the last couple of days. Thanks very much for the advice... it's obviously always going to be an ongoing battle but sounds like you've got it under control. You definitely need to know what you're doing when it comes to the timing of cutting back on the dose prior to blood tests. I have quite a stash of TEVA which I switched from around Sept time... enough to last me 80 weeks providing they continue to prescribe my current dose. I know that I'm now undermedicated but they've put some doubt in my mind and part of me is worried I could make myself seriously ill... like they've told me I would be!
I also need to decide if I'm still going to ask for a referral to an Endo or just increase my dose. I believe I have secondary hypothyroidism as my TSH has never been extremely high but I've never actually been told. I think they should be checking my pituitary.
I agree with Susie. No point in wasting any further time on this... can't think of a polite word! And he has the nerve to try and blame it on something 'going on at home'! How dare he! What's going on is that you have a doctor who is so ignorant he shouldn't be allowed within a 50 mile radius of a hypo patient. Well, in your place, I would say 'right, if you won't give me the increase I so desperately - and obviously - need, I'll give it to myself. I'll buy my own levo!'
Yes, I agree too. He obviously looked at my records and saw that I've had a lot of stressful times over the past years and assumed this was still the case. But I told him things were much better and the only stress I have now is not being able to work and earn any money. Plus if stress was causing my symptoms, how come I felt so well on the higher dose? I also asked him to prescribe 2 months worth at a time instead of 1 month and he said he would but that I'm only to take the dose prescribed... he obviously thinks I'm going to take more!
I'm so sorry you are suffering with such a hopeless GP. I'm not sure that a second opinion from his puppet-master would help. But he's sort-of offered a referral to an endo. I'd suggest a new post asking for recommendations of endos in your area - you don't need to see the nearest person but obv needs to be reasonably convenient. And google the hospitals near you and look at the thumbnail biogs of the endos - then you can see if any of mention thyroid or if they're all diabetes specialists really.
Please don't waste your life!
ps seems the "thing going on at home" causing you unnecessary stress is having to deal with an idiot GP ...
pps go back to tattybogle 's reply above and have it to hand when you speak to the senior GP. Mention that your research with Thyroid UK confirms what you have experienced yourself, that free T4 needs to be high in range for you to feel properly well, and that you are concerned that you don't have free T3 tested. That you are concerned that not being properly medicated is worsening your health. Keep very calm and very polite - and ask to see an endo!
Thank you and sorry for not replying sooner. I have the list of private and NHS endo's and there is one that's at our local hospital... I'll check to see if they mention thyroid.
I'll definitely have all the information to hand and I'm going to try for a face to face meeting rather than phone call. Although perhaps I should just push for a referral and not say too much to the GP. What really frustrates me is that, no matter what information you give them, they just won't budge with their attitude. I've taken the higher dose twice now but not sure if I should stay on the lower dose until I speak to her in a couple of weeks... the trouble is that by then I might not even be able to string a sentence together! Just reading this back you can tell my thoughts are all over the place!
first thing .. which you've already done ...... don't let them get inside your head with this gaslighting nonsense about 'something else at home' ... It's hard to handle when they knock you like this , but pick yourself up, and keep picking yourself up. You're NOT imagining what you've observed about your decline while trying out a lower dose .... and neither are most of the other 122,896! reasonable rational people who've come here over the last 10yrs .
You tried it out properly and have seen the disastrous results on your life , you're not just being un co-operative for the sake of it.
You've been responsible and done your research , you understand what their concerns are .. but they need to be balanced with your own quality of life/ ability to do your job / look after your children etc etc.
If GP (GP's boss) say " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .... The first paragraph for GP's in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says : nice.org.uk/guidance/ng145
"Your responsibility.
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "
"Interestingly, patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of cardiovascular disease, dysrhythmias, or fractures. It is unfortunate that we did not have access to serum free T4 concentrations in these patients to ascertain whether they were above or within the laboratory reference range. However, our data indicate that it may be safe for patients to be on a dose of T4 that results in a low serum TSH concentration, as long as it is not suppressed at less than 0.03 mU/liter. Many patients report that they prefer such T4 doses (9, 10). Figure 2 indicates that the best outcomes appear to be associated with having a TSH within the lower end of the reference range."
"if it's not thyroid. why aren't they looking into possible other causes" ..... unfortunately, as you've probably guessed ... they already have .... that's what the 'something at home ?' comment is about ... job done . no real need for any further investigations.
As fuchsia-pink says . keep calm and polite , because if you start getting too upset about this suggestion, they will tend to see it as proof they they're right , and start commenting on your notes about your 'emotional distress' ........ or to shut you up they may throw you a bone and send you off for expensive and intrusive investigations at any hospital department that vaguely fits with something you described... which will of course take 8 moths on a waiting list and come back as 'Nothing Abnormal Observed'.. but it will shut you up for a while, and you can't say they're ignoring you .
So what to do ?
me ..... i like a quiet life , and at the moment it's more important to me to stay away from the negative influence of Doctors gaslighting me any further than they already have , it undermines my self belief and damages my mental health .
So after having a stand up argument a couple of years ago to get my dose put back up despite their objection .... (they wrote that i 'understand the risks' on my notes , to cover their back .. which is fair enough) ........ i've now backed off from having anything else to do with them as far as my thyroid is concerned , similar to SeasideSusie , i just use them to supply my Levo , that's all .
I've got quite a stash built up , so to a degree i can do what i want with adjusting my dose.
Yes i have to give them a blood test every so often .. but the last one i gave them was worth the hassle of feeling ill for a few weeks to achieve a much higher TSH... so now that they're not worried/ paying attention anymore , i should be able to get away with "not getting round to" having blood test for a couple of years.
I'm confident i understand the subject well enough to talk my way out of any issues that arise. ( i'm damn sure my GP doesn't know what 'deiodinase' is, or that there are 3 types of TRab )
When i want a blood test to see where my levels are, i get a cheap one from MMH . (£29 for TSH/fT4/fT3 blood test ) , but after my previous adventures with GP reducing dose too far , i'm pretty well tuned in to how my body feel on too little /too much .
If i was more 'up for a fight' ..... i'd tell them that "if they couldn't prescribe a dose that meant i was able to keep my job / look after my family, and since i couldn't afford a private endo ...... i would reluctantly have to brave the internet and buy some more myself without a prescription , which would worry me as it could obviously be dangerous" ...and wait to see what happened next ...
Pretty sure that might allow them to overcome some of their fears about being dragged before the GMC for prescribing more Levo to someone with a low TSH , but a healthy heart and perfectly good bones, who clearly needed more to function effectively / have a healthy level of exercise.... rather than end up stuck on the sofa, rotting away quietly .
Thank you so much tattybogle , I really needed to hear this. You're right... they did get in my head and I was starting to question if these symptoms were real. I'm conscious of the fact that's all I now talk about to family and friends... thankfully my husband is very supportive but another family member suggested it was all in my mind!
This info is great thanks, I thought I'd read all the Nice guidelines but must have missed the bit where it says the guidelines are not mandatory. I definitely need to practice at keeping calm... I find that really difficult when it's obvious the person isn't listening. I'll spend time over the next couple of weeks re-reading a lot of this info so it flows off my tongue when needed. Although I can see me having to use the threat of buying off the internet.
Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both are large capsules. (You can tip powder out if can’t swallow 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
Obviously Ft4 now too low and likely to drop further due to inappropriate dose reduction
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.
Thanks very much for the info, it's really appreciated. I was taking a B Complex which I thought was good enough but changed to Thorne Basic B Complex about a week ago. I was taking a Vitamin D 3000 IU oral spray for 3 months but have changed to a D4000 IU spray. I take two sachets of Spatone a day for my Ferritin but am thinking of switching to Ferrous Fumerate which I was holding off taking as I know they'll likely make the constipation worse. I'm also taking a daily food supplement of powdered wholefood greens containing spirulina, kale, spinach, broccoli, chlorella, brussel sprouts (plus more) to improve folate, iron, fibre and vitamins and make sure I eat pate once or twice a week.
I was started on a dose of only 25mcg and stayed on that for over 4 years without my T3 ever being tested, whereas it should have been about 115mcg!
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Suppressed tsh - latest blood tests. Do I accept the anticipated reduction of levothyroxine?
Follow up blood test results 
Follow-up blood test result - without medication
Levothyroxin reduction and Painful Backache.
Request for more levothyroxine following results from Medichecks
