Hi! Hope everyone is having a good day . I would really appreciate some help please as I am beginning to feel really despondent with this condition. Started 50mcg levo December 20th and had blood test after four weeks which showed I was in normal range. I had another test last week (after 9 weeks on levo) with the following results
Serum free T4 level 14.5pmol/L. (11-26)
Serum TSH level 2.5 mU/L. (.27-4.2)
This again shows normal range .
My previous results were 15.6 and 2.87 respectively.
I am feeling increasingly tired. My hips and knees are extremely sore , and my muscles are much weaker , particularly in these areas and I have some weakness and pain when going upstairs . Knees and hips are bothering me when sleeping. My legs feel heavy and feel that my feet are in cement blocks at times. Occasional sharp pain in head (I don’t normally suffer from headaches at all). Sort of odd blurry eyes though I can read normally (no glasses). My skin appears to be dimply and I feel like I’m ageing 20 years in the last couple of months when previously I’ve been good for my age. My eyes often look like I haven’t slept for the last decade (ok , slight exaggeration here, maybe last nine years then!). I am still walking and swimming, with a tad of stretching yoga. I haven’t mentioned this to dr but I must make an appointment as dr has suggested via message that I am responding well and don’t need to be tested again for six months and can remain on this dose.
From what little I’ve read online (really trying not to frighten myself) and the even less that I understand, it appears that some symptoms can be caused by hypothyroidism and some by the thyroxine itself. How on earth do I know the difference? Should I stop taking it ?
I really would appreciate some advice here as finding this all quite confusing and deeply unhappy at moving about in discomfort . Sorry, for a bit of a whinging post and i do put on a brave face , live a relatively normal life where most people don’t realise there is anything wrong . Thank you
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Benjipuss
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You are ready for next 25mcg dose increase up to 75mcg per day
Make an appointment with GP
Explain you initially had some improvements, but symptoms are slowly returning
Also request GP test vitamin D, folate, B12 and ferritin if not been tested yet
Plus thyroid antibodies to see if cause of your hypothyroidism is autoimmune thyroid disease
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).
Thank you. My symptoms are actually becoming progressively worse than they have been at any time and appear to be getting more so, though there are odd fluctuations with no apparent rhyme or reason. This is making me concerned in that am I having an odd reaction to levo? I have never responded well to drugs and have always avoided like the plague . Also, would I be ok increasing by 25 as I read somewhere it can cause heart problems that can be permanent ? Should , if I’m able, increase more slowly . So many questions!
dr has suggested via message that I am responding well and don’t need to be tested again for six months and can remain on this dose.
That’s rubbish
Your results show you already need next dose increase
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)
is this how you did your test?
Free T4 (fT4) 14.5 pmol/L (11 - 26)
Ft4 only 23.3% through range
On levothyroxine aiming for Ft4 at least 60-70% through range
You need dose increase NOW and another test in 6-8 weeks…..not 6 months
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
Thank you. I have been following the protocols on here for thyroid tests . Initially I had all tests including a scan which is what showed a problem initially . On an earlier post although my folate was within range someone said it was low. I haven’t addressed this yet. I do have Hashi’s as antibodies but did read that if below 500 there is a possibility that it can rectify. Should T3 be tested every time ? Thanks for your help
Unfortunately the doctors have blinkers on when it comes to thyroid.They see TSH and nothing else.50mcg is a starter dose and the fact that your GP has told you to stay on that dose for another six months when your T4 is only at 23% is shocking.Your T3 will be low also and that’s what’s causing your muscle weakness,headaches etc.Insist on the 25mcg increase,your body is crying out for more levo.
Thank you. I think it’s because everything is now within range so dr thinks is all ok. Do I request 25 mcg increase or lower? My dr is lovely and I feel awkward having this conversation but I also feel so rubbish so something is out of kilter . It’s odd as the symptoms fluctuate
At 2.5 your TSH may be in range ( how we all hate that expression 😡) but its too high for someone on Levo. Whose TSH should be 1 or below. As nice as your GP is he unfortunately doesnt know how to treat hypothyroid correctly.
You should ask for a 25mcg increase. Or if you feel awkward try asking a different GP in the practice. Or if they have a pharmacist working in the surgery. Its difficult when you have a nice doctor as you dont want to potentially ruin a good relationship.
But you also want to feel well and healthy and that has to trump a doctor's delicate feelings lol.
Thank you. I will try and get an appointment but we are generally triaged via telephone first. Is a little more delicate when not talking face to face. The dr has listened to me historically when questioning so hopefully they will understand. Someone needs to write a good thyroid book for drs ! It’s really difficult when you have limited medical knowledge to contradict, but needs must
Ask the doctor to please test your free T3. It is the hormone your body uses. The medicine you're on is T4 and your body has to convert it to T3 to use it in your heart, brain, muscles, everything. Do not settle for less!
Thank you. I did have T3 tested in January and it was within range . Is it ok to ask for this to be tested every time ? I didn’t have it tested on this last occasion .
I would. When you say it was in range, what part, low range or high? The goal is to have it in the upper range then see how you feel. According to some sources, upper range T3 and mid range T4. It's really about you and your symptoms. Do as they say when it comes to your vitamins n minerals. Once you get everything balanced out, you could investigate your cortisol levels with a 4 point saliva test. I have yet to do it.
Someone on here said my T3 was not high though it was within range. From memory it was 4.5 I think and the top range was something like 6.8 . I need to keep a folder with everything in til l this is all sorted (hopefully at some point!). My vitamins and minerals were good apart from folate that someone said was low in range. In fact have stopped vitamin d and b vitamins as they were near the top of range and I don’t want to overdose. Thanks for your help
Your T3 in January was only 37% through range.Its too early to think about introducing T3 meds yet.I think you will find improvement in some of your symptoms when increasing the levo.It won't happen overnight, slow and steady is the only way.
You could try emailing them or even writing a polite letter. I've often had more success this way than over the phone. You could print off or quote the NICE guidance.
Sadly thyroid is treated very badly in the UK, we have an extremely high treatment threshold (TSH 10) which is higher than almost anywhere else.
I remember reading that whilst in training, which lasts 7 years, doctors spend an afternoon on the endocrine system. Which if you consider how common thyroid problems are, is pretty shocking.
Now you would hope that ongoing professional training and development would be a no brainer for GP's as medicine is a fast moving field, but you have to ask yourself if GP's have the time or interest in keeping upto date with the latest ideas and guidance.
When I needed a levo increase (after GP reduced it) +after private blood test results with admin response here, told GP that Thyroid UK suggested ......and it did the trick, got an increase from GP. The lovely ppl here, esp admins, know far more than GPs for sure!
Dear Benjipuss, I have a post from 3 mths ago, T3 and Cortisol. McPhanny has a great reply on her experience with T3. I've heard similar stories of it being a miracle drug or game changer.
The original poster only started thyroid meds in December and is only on 50mcg Levo. They should not be thinking of adding T3 at this stage. She needs more Levo. A dose increase to 75mcg a day and retest in 8 weeks. Not T3. That should be a last resort.
Not always...it's working for lots of people. I was just introducing the fact that T3 is the working hormone. Some of us don't convert well. Knowledge is key. I don't have all the answers. No one does!
I think that forum members would advise giving a proper theraputic dose of Levo a chance first. I've been on it for 4 years, at various doses, it wasnt until it was recently increased to 200mcg a day that I finally caved and self sourced T3.
I'd given it my best shot. No matter how much Levo I take my conversion isnt good and I dont want a high FT4 number as that can have health risks.
T3 is difficult to get, you either need an NHS endo to prescribe and many are anti T3, you go down the private route, with all the costs involved, or self source, which has its own issues.
T4 monotherapy works well for many people, its free and readily available. If doctors prescribe enough of it, instead of sticking to their outdated TSH dosing mantra, then it is often ( not always) all people need.
Benji will probably need a few more dose increases first before considering T3 😊
I think the post might have been myself commenting. I found adding T3 along with T4 I was already taking really boosted my cortisol figures. Infact T3 has boosted just about everything in my body. And probably stuff I’m not even aware of. For myself T3 has been a massive improvement to my health in so many ways. I do believe that’s down to keeping my levels and TSH in range… just.
Having read the article (thanks!) I’m feeling a tad anxious about increase in levo. Should I be looking to increase hormone by less than 25mcg. I am extremely sensitive to medication
And consider that you probably have the option to raise your dose slowly. For example, if your doctor prescribes 50 + 25 you could actually go for 50 + 25 alternating with 50 - effectively 62.5. Or 50 + a split 25 - also 62.5.
(If your doctor prescribes 75, there is only one make of 75 - Teva - which quite a few members don't feel good taking. So 50 + 25 is likely preferable anyway.)
I suspect that you do really need 75 now. But the above allows you to take whatever time it takes to try a more incremental approach. You can pause at 62.5, going on and trying 75 when you feel ready. And could even alternate 62.5 and 75.
Being prescribed 75 (as 50 +25), gives you control and freedom at least until your next GP appointment and test.
Thanks, have read article, interesting. I am on liquid levo which I think is teva. I’m not sure if I can get it raised slightly by 6.25 on my next prescription ? And then slowly after each 6-8 week test , or maybe I have to keep to 50mcg but have one spoon and a half alternate days ?
I'd get an oral syringe which allows you to far more accurately dose.
The issue is, really, only a matter of persuading your GP to issue prescriptions at a suitable interval! If you are using more, you will need them more frequently. Though if you are not on the highest potency, you could switch that. (Prices tend to be similar regardless potency of the liquid. So higher strength is likely to end up less expensive.
Don’t even think about T3 at this stage of the game. Your (everybody’s expectation) at the commencement of treatment is that you are going to feel better. Doctors get you out of their office asap with your prescription, without giving you any reality of what to expect. What you describe is what many of us have experienced. Keep it simple (by not being seduced by thoughts of T3) and concentrate on getting your next increase in Levo first, to see what happens. And stop exercising for a bit, this can have a detrimental effect at just this moment.
I find it hard to stop exercising as I always feel better for doing it and enjoy it. I’m not super fit ! I leisurely swim or walk most days. I have had long covid since early 2020 ( symptoms oddly quite similar to Hashi’s ) and have tried to prioritise fitness whilst pacing. Over last summer I was almost finally recovered and then after multiple bugs , including covid again , my thyroid became inflamed. I did have mri and wonder if the liquid they gave intravenously could have altered my initial thyroid test along with my vitamin b supplement?
I do think there. Is very little information given for this condition and what to expect and am super grateful to this forum for helping me to try and understand. The lack of information makes it so much harder to manage. I shall not look at anything other than levo but am a tad anxious after reading about heart issues if increased too quickly and too high a dose
Don't worry about heart issues at this end of the dosing spectrum. You are barely out of the gate. You must have enough Levo, keeping doses too small for too long will make you more unwell than before you started. Allow 8 weeks between a dose increase and a blood test and you will not be going too fast. If you were on tablets I would say get a 25mcg increase by having a 50 and a 25mcg tablet and break the 25 in half with a pill cutter. Add half to your existing 50mcg a day for 2 weeks and then, if you feel OK, add the other half. If you feel any kind of anxiety at the addition after 2 weeks then back to half a tablet for another week and try again. I've never used liquid Levo so you will have to talk to your GP about how to increase that in half amounts. You should be using a syringe, not a spoon. Far too vague. Why are you on liquid and not tablets?
Personally I always feel crap when I increase a dose. It can take 3 weeks to come out of that so please don't think it's not working if you feel worse for a while. I would seriously avoid too much expenditure of energy or you risk making things worse. Stick to a gentle walk for the next few months. Swimming can wait.
Thank you! I’m not good with tablets for a long time going back to major issue with seriously low ferritin years ago. Not exercised today so joints less aggravated but numbness in legs is worse! Have started with boswellia so hopefully that may be helping. Why not do a little exercise as important to keep strength ?
Thyroid tablets are very small. Tiny things. So if you hate swallowing large tablets that is not the case with these things and might be worth trying.
I don't know what boswellia is. But avoid adaptogens until you are on the right dose and settled.
"Why not do a little exercise"? Because your body is under a great deal of stress right now because you are hypo. You don't have enough energy to run all the bodily systems and functions. That's why you have been started on medication to increase that energy. It's the energy of ever cell.
In the early stages of medication things can get worse before they get better and you can have less energy than you started with for a while. If you exercise you are simply robbing some more important bodily system of the energy it needs to work properly. If you balance exercise on the one side and bodily function on the other, bodily function is way more important.
It's not forever. But right now, it's a bad idea and is not going to be helping you find your right dose and recovering your energy. You are too afraid of the medication and not afraid enough of exhausting your body. Try and refocus a bit on those 2 things. Going for a walk, not a hike, but a walk, is good for everyone and gets us into the fresh air, so provided you don't have to go to bed to recover when you get home, that's fine. More structured exercise is not beneficial in the early stages of recovery.
Thank you for the explanation. Boswellia is meant to be excellent for inflammation . You are correct in that I am terrified of the hormone and less so of exhausting my body. With long covid I have had to accept being often exhausted , till last summer I was almost back to my old self. I’m not ‘good’ at being unwell and do try to push through, and am bit of a moaning Minnie!
"Pushing through" is just about the worst thing an under-medicated hypo person can do to themselves. This is new territory for you. It's not the same as L. Covid although it might share symptoms and reactions. It needs treating differently by the patient. You won't get better advice than here.
Our bodies are producing all sorts of hormones all day long. We would die without them. Indeed you will die without enough thyroid hormone and by all accounts it's a horrible death. So stop being scared of something your body needs but can no longer make in enough quantity and start helping your body by taking it. You will have to grit your teeth and bear the unpleasant side effects if you get them for a few weeks on a dose increase. It's just something you have to do to get better.
You should seriously consider trying tablets to get accurate doses if you don't manage the syringe well. If you explain to your doctor that you are afraid of tablets, but would like to try taking them and could he make up your entire dose using 25mcg and 50mcg tablets only, you will be sure of tiny tablets that you hardly notice. This is your full time job now. Doing what's needed to get well. Forget everything else you thought was important.
Thank you, I will try. Please may I ask if the thyroid is being damaged, and it makes several different hormones, why are we replacing it with only one hormone?
Oh goodness, well they give us T4, which is a storage hormone. Our bodies convert it to T3 the active hormone and trace amounts to T2. So in theory they are doing the right thing. But some of us have a genetic profile that makes the conversion harder or more hit and miss and we might need to spend a lot of time working out how to convert more efficiently. And if we can't, we need T3. The NHS is pathologically frightened of T3 so they fight us all the way. That's why so many of us have to experiment, test ourselves privately and work out what we need - then buy it.
You have multiple things going on here. Yes it’s good (especially for mental health) to get out walking etc and off course you think you are better for it. Everybody tells us so. Every bit of media etc. However there are other things to consider when you are hypothyroid and commencing treatment. Something called conversion can be damaged by taking too much exercise when your body is just not up to it and this makes you feel much worse than you need to. I find this difficult to tell you because I too liked exercise and getting out. It still feels ‘against the grain’. My willpower was such that I further damaged/delayed my recovery through thinking exercise would ‘make it right’.
You of course must do what you think is right for you. I am not gaslighting you. I would not want to do that. I just want to encourage you to do the best for yourself. It’s not forever. It’s just till you have settled on your thyroid treatment.
I see you have also had covid a couple of times. We know there are similar signs and symptoms associated with both covid and thyroid. You are perhaps fending off both conditions.
Re: MRI I am researching right now because I have to have similar soon and have found the radiographers remarkably ignorant of the fact that patients with thyroid conditions should not be subjected to iodine dyes.
Thank you. It is difficult not to exercise . Had covid three times, long covid from the first time April 2020. Extremely unwell with long covid initially though not too bad with covid itself through earliest variant with no vaccine was what really caused the problem. Symptoms are so similar. Many long coviders are getting thyroid issues . It took me a massive amount of time to learn to pace unless I was too exhausted to, and I’m beginning to wonder if I need to do similar now ? Am tired but nowhere near as drained as I was . This had virtually cleared up though by last summer so am feeling hugely frustrated to be enduring another health issue. I really do not want to lose the level of fitness that I have , which is only walking and swimming for pleasure , I am not an Olympian! I did wonder if thyroid was also aggravating my long covid as it can flare a bit if I get infections or seriously overdo things. Dr did agree we can’t really tell what is what now…my symptoms are fluctuating , which is like covid. Does Hashi’s do this too as if not that can help me differentiate a little? My query re mri dye is that I had this shortly before my first thyroid test , had caught a couple of nasty infections that were circulating , including covid , and had been horrendously, but pleasantly busy for around 7months , and with my psoriasis, being tested in the late morning after eating and taking b and d vitamins , I still wonder if this had increased my antibodies temporarily ? There was an awful lot going on at this time!!
Iodine contrast dyes are used for X-ray imaging. Of course, there might be some iodine ingredient in some MRI contrast agents - but they are often gadolinium. And they can cause adverse reactions.
This is a search for relevant articles in the above linked site:
I think this will be common. After all, for most people, it really is something to accept at the time then forget.
The Wiki article seems reasonable. Gadolinium used to be used quite a lot but, where possible, is avoided due to the possibility to adverse reactions. Still needed for some MRIs. But the possible alternatives do not seem to be used much.
But I would be absolutely wrong to say yes or no. I simply don't understand the whole area sufficiently to have a rational opinion. I think you need to research and contact people who might know more.
Thank you. So many unknowns! If I find anything I shall feed back. Also new symptom today that you may be able to throw some light on please ? We went for walk with friends and my internal thermostat is not particularly effective, I often feel hot when others don’t (also been a long covid issue in the past). But new symptom was hands being slightly blue/purplish/pink , but I wasn’t cold. Little concerned. I think I overdid it , won’t do again , is difficult when with others.
Hoping not but thank you! I have been for walk today and been ok so not sure if odd blip. Me and other half are not spring chickens anymore (though we do try to masquerade) and his hands looked worse than mine !
“The free iodide load of contrast media injections interferes with iodide uptake in the thyroid and therefore compromises diagnostic thyroid scintigraphy and radio-iodine treatment of thyroid malignancies for 2 months after administration of contrast media.”
Right that’s good because I have not got around to checking the details yet. However it’s a CT scan I am having, I see now, which I understand is an X-ray. Any thoughts on that helvella, Fount of all Knowledge? Input appreciated because I am up to the brim with everything going on!
Yes! The radiology guy said the issue was with hyperthyroidism not hypo but he did not sound at all confident to me, bluffing a bit and assuring me it would be done to NICE Guidelines which I have not yet checked. I am apprehensive because of CKD which I am also assured is not ‘bad’. Honestly sometimes I think the two conditions, (hypo/hyper) symptom wise can be so similar, no wonder there is so much confusion about over/under medication when certain things arise. I have been affected before by dye in the process and I am not looking forward to that aspect at all. Even although I still have many symptoms, sometimes you are just thankful for a status quo you can handle and no wish to further tempt fate outside your own decision making. Of course I could not agree but it was me who initiated this whole blooming investigation!
Maybe, I can't read every reply (there's like 50 of them) but my personal opinion is your doctor knows nothing about thyroid disease. Because if they did, they would have tested your T3 each and every time. In truth, a knowledgeable doctor knows combination therapy works best. Only testing T4 and TSH is outdated and they just haven't been caught up with the new science and treatment. There are many knowledgeable people on this forum.
Thank you . Yes, I am extremely grateful to you and everyone in the forum being kind and supportive whilst I am struggling to understand and manage my thyroid which till very recently I never even thought about! I do know from my initial consultation with a dr when first diagnosed that they have many patients with this condition and they said it’s fairly common but obviously ,as you say , they are not as up to date ( although in other respects I’ve always been happy with them). I do , as others have said, need to have this discussion with them . The lead dr has recently retired a year or so ago and treated me for decades since leaving university and he would always listen and follow up. I’m hoping the younger drs will do the same as money issues , understandably in some cases, are often at the forefront of decision making ! Apart from my last test I have not had T3 checked , it was 4.5 , but not had conversion done .
These will make the conversation easier when asking GP for dose increase:
this first one is a list of references , some were taken from GP 'update' publications, all recommending GP's aim to keep TSH between 0.5 - 2 /2.5 ish in ALL patients on levo. (increasing your levo dose will lower your TSH, so if your TSH is 2 ish and you feel hypo symptoms , then GP should be increasing dose a little , eg 25mcg)
So if GP says "but your TSH of 2 is 'normal' now" you can ask them to read these which will reassure them that TSH 1 is probably 'better' than 2 " , (and that going as low as 0.5 is not a cause for concern)
This second one will help you understand (and explain to others), why 'normal / in range' is not the same as 'optimal for the individual ': ( shoe size analogy)
Thank you. Have spoken today and because of a little ambiguity whether I’m reacting badly to thyroxine or whether an increase would be good, we are waiting four weeks than I’m having another test to see what might be rising or lowering. Long covid symptoms are similar and that could be rattling too so another four weeks hopefully will give a clearer picture
To answer an earlier question of yours, you only need Levo / T4 because your body will convert that T4 into T3 and other more minor hormones in the chain reaction of it all.
Sometimes our hypo is complicated. Later for you it might be. You are lucky right now as your situation, symptoms and bloods are crystal clear. There is zero doubt you need an Levothyroxine increase. Don’t be worried when your symptoms continue for the next 4 weeks while you wait it out. A 25 Levo increase should be your next step when you’re ready.
So as not to divert the other post I will respond to you here.
dr has suggested via message that I am responding well and don’t need to be tested again for six months and can remain on this dose.
This is a real problem since grabbing hold of any GPs attention is very difficult these days. They tend to do the quick and lazy thing of sending text messages not even having had a discussion with you. Its an art form and skill in itself to get through to a GP what the problem is and what you would like done about it.
So the ball is now in your court to get the message through to your GP that you still don't feel well despite blood results being 'normal' and there is plenty of room for manouvre within the blood results to try an increase.
Even if you have to go through triage you could try for a non urgent appointment. You could also try using eConsult if your surgery has that facility.
It does take being a little bold and some courage to challenge what your GP has said. Have a read around here and you will find many members in a similar situation. See what advice they have been given and what has worked for them to get a dose raise.
You may need to be persistent and ask for a dose increase more than once with different doctors but you will get there.
Point out to your GP the NICE guidelines that state an estimated final dose on a calcuation of weight in kilos x 1.6.
Thank you! I just feel a little nervous about all this as at the moment it seems quite complex and I don’t want to make myself more unwell by having too large a dose. I’m assuming, ( for those in the know ), that my symptoms are normal for people that are not on a high enough dose. Am I correct in thinking that?
I am fortunate enough to be able to get appointments , and yes, info is sent by text though usually I am allowed one response!! My last bloods the dr also checked for inflammation which was twice what it should be and I am producing immature blood cells (nucleated red blood cell count). But no action on this.
My TSH was 1.71 (so it is coming down which is good?)
T3 was 4.8, so this has gone up a little bit
No T4
Would this mean if I stayed on this dose that eventually my TSH would continue to come down to the level of 1 or below , as it has dropped .8 from earlier test? And T3 has increased by .3
I do react strongly to medication, and not always in a normal or good way so I am worried that if I upped my dose would these changes be really dramatic and would I be better taking it slow on a low dose with the above changes ? Would these eventually get me to the ‘sweet spot’ where my symptoms go?
It all feels a minefield and I’m finding it of great concern that it appears there are not enough endos and they are often ill informed .
my symptoms are normal for people that are not on a high enough dose. Am I correct in thinking that?
Its completely understandable to be nervous and unsure about things at this stage. It can take some years even to begin to understand how it all works.
Your TSH is at 1.7 so I know th enumbers seem small but theres actually plenty of room to increase and bring your TSH below 1. We dont always go just from TSH which is why its helpful to have FT4 & FT3 results at the same time but your result points to being under replaced so yes your symptoms are reflecting that.
Would this mean if I stayed on this dose that eventually my TSH would continue to come down to the level of 1 or below
If you are under replaced then the likelyhood is that over time your TSH would rise further. Its highly unlikely to get below 1 unless you have a dose increase or two.
What is your approximate weight in kilos?
would I be better taking it slow on a low dose with the above changes ? Would these eventually get me to the ‘sweet spot’ where my symptoms go?
You could go up in 12.5mcg increments so your next step would be 50/75 alternating days. If you are sensitive to meds then try and get the same brand at each prescription. Your GP can write your preference in the first line of the prescription.
So long as you are increasing, even slowly then you would reach your sweet spot in time.
People who see an Endo are often disappointed by their lack of knowledge and sometimes ignorance, sad fact. Most likely with recommendations from here you will get well without one.
Thank you! Most of the time I’m ok but sometimes this is all a bit much ! I’m just wondering if my TSH continues to fall each month and my T3 continues to rise ( I am being tested again this month) could I begin to feel better on this dose given time if it continues on this trajectory? )
I am not so light so if that was the only criteria I would be seriously unmedicated !. However, I’m extremely sensitive and react strongly to things that most people don’t so there may be a possibility that a low dose helps me more than it would someone else.
As you can see, I am feeling very conflicted by all of this . Thank you for bearing with me
As I said, its more likey that your TSH will rise again and FT3 fall. I'm a bit surprised they did an FT3 and not even an FT4 but there we go!
If you are sensitive to meds then its all the more important to get key vitamin levels to optimal. This will help you with intolerances, particularly if you have low ferritin.If you have inflammation then your ferritin result is likely to be a false high.
Just take it steady with 12.5mcg increases each time to help the intolerance.
The calculation to work out estimated dose is a guide only. You may need a litle more or a little less.
1.6 x weight in kilos = approx dose.
Hypo symptoms can stack up over time, so you may not feel so bad at the moment but in a few months feel much worse on the same dose.
Thank you. I’m sorry, I’m a ‘ nightmare’ patient , I have to understand everything and question it all.
I don’t know why ft4 not checked,unless it was under a different name on results
My folate was regarded as lowish on an earlier post ,sorry, my brain is mush, and wonder how best to improve this ? I can only retain so much at once in addition to all the minutia of life!
Keep asking and the information will slowly seep in.
Did you also have your B12 checked?
Its usually suggested to take a good high dose (check the label, dont rely on it telling you its high dose), methyl/active B complex which contains both B12 & folate.
Before you do that though it would be good to test your B12 and see exactly what level it is at. I can make some suggestions for a B complex once we know your B12 level.
Thank you, let’s hope so!! Think it was 700+. I have a good , I think, b vitamin complex. Shall check label, but if I’m low in range, possibly not. I’ve had numb sensation in feet since long covid but nerve conduction test says ok, dr says my brain sending wrong signal which common. However, nhs only do one test which read dead b12 as well as active. So who knows! Is folate in b vit or do I need something else please?
I was just taking B 12 to see if it helped my feet, it didn’t! I was advised to get a B complex as was told that B12 supplement could hide a different B deficiency . I didn’t realise folate was a B vitamin! On my first test results someone in the forum said my folate, although in range, was low. Got it last year but not taken too regularly. Though had taken B12 for year or two. Don’t understand how B12 high but folate low? I’m taking nutravita.
Brain fog. Nutravita is my Vit D. I’m just thinking about this…as i was told to take B12 I’ve had that for a couple of years so my B12 is high. A health professional did mention with my symptoms to get a B vit complex as it could be masking a b vit deficiency. I didn’t really understand this at the time. Although I bought a complex in the last year I was busy with a lot of travelling and so on and didn’t take it frequently with gaps where I had none. I’m wondering if my folate was below range but my intermittent dose enabled it to become low in range. I’m wondering if this could be the source of some of my issues ?! I would really welcome advice on a folate only liquid , no additives and preferably organic if you know of one please? Are some sources better than others ? Or shall I do another post?
This looks great, I shall go for Amazon, though I generally try not to. I think i may have been deficient in this for some time so am hoping for great things! Thank you so much for your help. Feeling more positive again 😊
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