I've been so stupid, can anyone advise please?

Well after my first post , 25 years on levothyroxine and it no longer seems to be working for me, encouraged by all I was reading on this forum I decided to try and find out more. Firstly I have realised how stupid I have been when ringing up the doctors for my thyroid blood test results for over 25 years and being told they were normal and no further action required. I never asked what the actual results were or requested a printed copy, I assumed they were the experts and therefore must know their job.

In 2014 my levo dose was dropped from 125mcg to 75mcg as I was told I was being over medicated. Since then I have felt incredibly unwell which has resulted in many problems and hospital referrals including breast pain diagnosis, costochondritis (which I understand to be inflammation in the rib cage), angina bullosa haemorrhagica (extremely painful blood blisters on the mouth and tongue), numbness, pins and needles in hands and feet, excruciating cramps in feet and legs , extreme cold ,joint and muscle pain ,severe vertigo. My memory became poor prompting my doc to do a test they use for dementia. He told me that my test was fine. I then ticked off my list of symptoms on the Thyroid UK page and took it to my new doc as we had recently moved home.

She ordered a series of blood tests and told me they were all normal except for my cholesterol which had come back high for the first time ever. She arranged for me to have physio for my muscular and joint pain and reluctantly agreed to refer me to an endo. I had never seen an endo before and was optimistic that at last everything would be sorted out. (yes really, how stupid am I !)

So my appointment came and the endo referred to the list of symptoms I had shown my doc , she picked two of the symptoms off the list , carpel tunnel syndrome and irritable bowel syndrome and along with hypothyroidism wrote this as her diagnosis in the letter to my doc.! She stated my bloods were normal and to stick with the 75mcg of levo. I repeated how ill was feeling so then questioned that maybe the thyroxine was no longer working for me. She told me that there was no evidence whatsoever that T3 worked for anyone and that she had never heard of NDT. She said that I should probably see a rheumatologist and that I probably had CFS. I disagreed stating that I believe that all my symptoms are due to the fact my underactive thyroid is not being treated adequately. She then said I should have a short synacthen test done while I was there. It was done at 4pm however she said that was ok as she had the results from a 24 hour urine collection test so that would complete the picture. The test result was sent to my GP as adequate.

On my last endo visit , still feeling very unwell she reluctantly put my levo up to 100mcg 'with the aim of getting and stabilising my TSH down to 2.5 in hopes that I may feel a little better'

Prompted by the info I was reading on this site I requested my blood test results from the last several years. So here goes, I hope someone out there has stuck with me this far!!

Aug 2010 TSH 0.38 (0.3-5.5}

June 2011 TSH 0.1 (0.3-5.5) FT4 16.9 (10-19.8) FT3 4.7 (3.5-6.7) notes say TSH below range FT4 suggests patient euthyroid TSH maybe suppressed in subjects taking T4

July 2012 TSH 0.1 (0.3-5.5) FT4 18.1 (10-19.8) FT3 5.1 (3.5-6.7) notes TSH below range

Sept 2012 TSH 0.1 (0.3-5.5) FT418.4 (10-19.8) FT3 5.3 (3.5-6.7) notes THS below range

April 2013 TSH 0.1 (0.3-5.5) FT4 12.7 (10-19.8) FT3 4.0 (3.5-6.7) notes TSH below range probably euthyroid results.

June 2013 TSH 0.1 (0.3-5.5) FT4 17.1 (10-19.8) FT3 5.3 (3.5-6.7) notes TSH below range, abnormal, patient needs a telephone consultation.

Oct 2013 TSH 0.1 (0.3-5.5) FT4 16.1 (10-19.8) FT3 5.0 (3.5-6.7) notes TSH below range.

Aug 2014 TSH 0.1 (0.3-5.5) FT4 17.3 (10-19.8) FT317.3 (10-19.8) notes TSH below range.

Nov 2014 TSH 1.2

June 2016 TSH 3.7

May 2017 TSH 3.7 (0.4-4.5) FT4 12.6 (10-24) FT3 3.9 (4-8.3)

Aug 2017 TSH 2.7 (0.4-4.5) FT4 12.6 (10-24) FT3 3.9 (4-8.3)

So as my TSH appears to have from 2011 to have been suppressed as far as I understand that's ok providing the Ft4 and FT3 are in range? During that period and indeed since I started on the levo I have felt ok but not as well as I think I could have been and from what I have learnt on here that I believe could be due to a vitamin deficiency.

What I don't understand is that when my endo put my dose up to 100mcg several weeks ago is that around 5 weeks in I felt so much better for around a week , all aches and pains improved , cramps were better as was my vision ( my optician had recently sent me to the emergency eye hospital with blurred and double vision) and best of all I was able to get a proper nights sleep. Anxiety , mind racing all diminished. Now however I feel I am back to square one and I know I am still under medicated, though I believe my endo has achieved the TSH result she is looking for and will probably discharge me when I am due to go back this Thursday. What I don't understand are the latest two results show that only the TSH is different 3.7 down to 2.7 while FT4 remained at 12.6 and FT3 at 3.9 . I don't understand this . Will the correct dose of levo still work for me and how did I feel so much better for a few days when FT4 and FT3 remained the same?

I really think I wont get anywhere with this endo and am not sure whether to attend this Thursday. I feel truly awful again and am thinking maybe to just increase the levo 125mcg myself?

The only vitamin results I have had done are Sept 2014 Vit D 50nmol/L (24-167)

March 2017 Vit D 62nmol/L

July 2012 B12 346ng/L (190-800)

Sept 2014 B12 462 (190-800)

July 2012 ferritin 197ug/L ( 12-300)

Sept 2014 ferritin 228 (12-300)

July 2012 Folate 7.0 (3.9-14)

July 2014 Folate 10.6 (3.0-17)

Many thanks to anyone who's stuck with me this far, I would be grateful for any advice offered and for those of you who may have nodded off, many apologies or maybe I helped you out!

25 Replies

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  • My short responce is that you looked to be doing well in 2014 with both frees good. Isn't it amazing when you realise that they have not been treating you optimally or even actually understanding how to manage you? Well done for taking them on and fighting through the symptoms to regain your health. And thank goodness for TUK and HU!

  • Someone more experienced than me will be along but there's one question that comes to mind. How did you feel on the dose you were on when your TSH was suppressed?

    It strikes me that your dose was wrongly drastically reduced in late 2014 - was this because your GP/Endo at that time was misguided and was treating your blood test TSH rather than you? Your FT3 numbers looked pretty good for tests up to that time.

    Now you've found this site and the very good people here will help you work back to better health.

  • Thanks to cwill and SolsticeSS for your encouraging replies. I've been treated for this thyroid problem for at least the last 25 years but its only this last 3 years of so when I've felt so bad. I only requested my results for the last several years but have since applied yesterday to view my records online. Until my levo was reduced I felt pretty good but as stated previously I think I could have felt even better had my vitamins been in their optimum range. Looking back at my records a couple have notes on them state that although my TSH was suppressed and I was on T4 then it was probably due to a euthyroid state. It therefore appears to be dependant on who is checking my results. Looking back I think the problem occurred when my regular GP retired and I signed on with a new GP who must have seen the suppressed TSH and reduced my dose. (not the GP I am with now as we moved home recently) Ever since I have been hypothyroid I have never had a referral to an endo until this March. I just assumed the levo was no longer working for me until recently looking through my results. I always took their word for it when I was told my results were normal.

  • That totally sounds like my experience: from taking the GP's interpretation of my 'Normal' bloods as gospel yet feeling completely helpless as I just KNEW it was my thyroid and I was right. I could feel it!

    In the past few months I've worked on getting my criminally low Ferretin level up (amongst other deficiencies) so that my body can convert the Levothyroxine properly. And so that I feel better - I was so low in iron, B12 and Vit D it's no wonder I was feeling braindead and couldn't get out of bed!

    In the last month I've been taking T3, and could tell the difference in the first fortnight; I was finally beginning to improve. The pain reducing was the first thing I noticed

    One month on and I can hold a conversation, stay out of bed for at least part of the day (I have ME/ CFS) and concentrate better.

    I honestly thought I was suffering from early-onset Alzheimer's (I'm 41) and have been so frightened this past year and a half - my brain has been like porridge (and somewhat different from ME/ CFS brainfog) so it's been a relief to learn that my cognitive function and memory can still improve.

    I'm not there yet, but if this is one month then in two, three, six months I expect to be in even less pain with even more mental clarity.

    I too am SO upset that we are left to discover and manage all this T3 business ourselves. It's infuriating to be so badly treated (both literally and figuratively) and frightening to think there are so many stolen lives out there as a result.

    I have probably lost years of my life to being wrongly medicated for hypothyroidism, and yet I'm one of the lucky ones because I discovered this forum and all the wonderfully knowledgeable people on it.

    You're at the start of your journey too, and trust me: it takes time, effort and patience, but things can only get better!

    Good luck,

    Abi.

    PS; Sorry - turned into a rant. And additional T3 may not even be relevant to you!

  • Abi-Abster So glad you seem to be on the right track now and long may you continue to improve! I am banking on the GP who I am due to see on the 11th of this month to have much more of an insight into my problem when I point out the evidence I have for him and which will be on my records they hold in any case. I have never seen him before as we are pretty new at this practice but have been advised that this is the guy to see. Looking back at my records I can see that there was no reason whatsoever to lower my levo and my that problems all began when a new doc took over, looked at my suppressed TSH and telephoned me to say he needed to reduce my levo immediately. He clearly hadn't a clue as for many years prior my TSH had always been the same. I feel such an idiot that it was only after finding this forum it ever occurred to me to actually ask for a copy of my results to find out for myself what was happening. I still feel shocked by it all and my appointment with the endo on this Thurs is a concern. Your right lives have been stolen and I feel very angry with her, not only do I consider her useless but worse a serious danger to her patients. Like my daughter says , she will never admit she's got it wrong because with her clueless ideas it wont be just me . So there you have it 'a rant 'right back at ya! Good luck moving forward, long my your improving good health continue.

  • Hear hear to it all!

    And don't feel stupid about not knowing/ thinking any of this before: It's not a reflection on us but on the limitations of the medical profession.

    Take care!

  • Blood test results look fine until Aug 2014. Your FT3 and FT4 were in range and near the top of the range which is where you want them to be. After that things seem to have gone downhill. Did you feel better before Aug 2014? Vitamin D could be a little low although there doesn't seem to be a comment next to the result giving any guidance. I would test it again.

    Have you got thyroid antibodies results? It doesn't look like you've got antibodies as your results seem to be fairly consistent with your dose of levothyroxine but it helps to know.

    If you could increase you dose and see how you feel that would help you to work out if it's the dose reduction that's made you feel so unwell. I'm also wondering what levothyroxine you are taking as some types can work better for some people.

    In addition, if you are taking any other type of medication, it could interefere with thyroid medicines absorption or the medicine itself may give you side effects so you need to rule that out too.

    I expect you already know this but you should take your thyroid medication on an empty stomach and leave one hour before eating or drinking anything else (water is ok) and leave 4 hours until taking any other medicines/supplements.

    For blood tests, the general advice here is to wait until you've had your blood test and then take your levothyroxine for that day.

  • Thanks for your reply Nanaedake, the only other things I take and have taken for many years is a high strength cod liver oil capsule and a zinc/vit C supplement. I have always taken my levo with water on an empty stomach and well before eating or drinking anything else.

    In the letter the endo sent to my GP she states that TPO antibodies were negative .Also she says that my Vit D was in the normal range , though I'm not sure that its within the range I have seen recommended on this forum. It was 62nmoll/L (24-167) in March this year For the last two TFT it was early morning on an empty stomach and leaving off my levo dose until after the test. However regarding my many years of testing prior I was unaware that this was the better way forward.

  • It's no coincidence that mid/late 2014 was when your problems started. I started on 75 mcg (now on 150 and feel good TSH 0.13) and you were reduced *down* to that dose.

    The good thing is you are on the case and determined to get well again. 😊

    Not everyone does well on levo, and of course there's lots that affects conversion.

  • Well, some suggestions would be that B12 is better at the top of the range so there is still room to improve it. Vitamin D you could retest and check the range. Best to be mid-range so for most in the UK this would usually be around 100 but you need to check the lab range and look at their comments for satisfactory range as they can vary.

    What brand of levothyroxine are you taking? It could be worth trying a different brand although you would need to take it for 6 weeks and then retest to check that your absorption hasn't altered.

    Although you don't have thyroid antibodies, you could try a gluten free diet or for me, what's worked has been a low carb, high fat diet as recommended on the diabetes UK website. I don't have diabetes or thyroid antibodies but it's improved my general health and wellbeing.

    You could try a good probiotic because many people who are hypothyroid have gut problems and a good probiotic might improve gut function. It's something worth trying for a few months anyway. I've seen Betain with Pepsin recommended here and I've just ordered some to try so will let you know if it works for me. Until now I've used organic apple cider vinegar with a glassfull of water before my main meal which ensures I don't get acid reflux and seems to have reduced any bloating.

    UK levothyroxine manufacturing requirements were altered around 2014/2015 so I'm wondering whether you were switched to a different levothyroxine around about that time because your dose was changed and sometimes pharmacies will issue another brand to meet the dosage requirements, not realising we can alternate or split tablets. Could it have conributed to your change in health status?

  • Thanks for the advice nanaedake. I was on Eltroxin but when that became unavailable I have since been on Mercury Pharma which in understand is meant to be exactly the same. I have bought some vitamin B12 and a Vit B complex which I have seen recommended on this forum ,from Amazon and although I was originally planning to maybe hold off taking them until I have seen my doc on the 11th of this month I am now thinking to start them from today as well as the extra 25mcg of levo. I have just had enough of feeling this way. In my daughters words I am ready for a 'factory reset' !

  • I went from Eltroxin to Mercury Pharma and despite their assurance it was exactly the same I was unwell until I changed to Actavis. I don't see how it can be exactly the same or why would they charge more for Eltroxin which is the reference drug for levo in the UK. They might use different solvents which are not listed in the patient information leaflet as they evaporate but can effect how the drug functions. I'm not saying it's the cause of your symptoms but don't assume Big Pharma tells you the whole story. It's about profits, not patients first.

  • I didn't realise that. I had read the leaflet and noted the ingredients were the same so thought it would be ok. It is something I will have to keep in mind, I cannot recall exactly when my Eltroxin was changed to Mercury Pharma. I am hopeful that it will still work for me as like I said when my dose was upped to 100mcg several weeks ago I did have several days after approx. the 5 week mark where I felt much better in every way. Now I feel I am back to square one with a bump! However I am sure I read on the forum recently that this can happen when your body gratefully takes up the extra meds and then soon realises its still not enough. I don't think I dreamt it, but anything's possible in my state!

  • Well, that was a really duff endo you got there! lol Knows absolutely nothing about thyroid! No wonder you are confused.

    The first thing you need to know - and the thing that doctors do not know - is that the TSH is irrelevant once you are on thyroid hormone replacement, unless it goes high. It doesn't matter how low it goes. A TSH of 2.5 is certainly too high, and most hypos would feel terrible with a TSH that high! The most important number is the FT3, which most people need to be up the top of the range, to feel well. Yours is now under-range! So, not surprising you feel bad. Your FT4 is pretty low, too. You really are very, very under-medicated.

    If you can put your levo up to 125 mcg yourself, then it would be a good idea. But, how are you going to manage that long-term? Because, to be honest, whilst it would be a start to increase by 25 mcg now, I think you are going to need several other increases of 25 mcg in the future, before your levels come up to a comfortable place. Are you planning to buy your own on-line? Because, if you are planning to do that, you might just as well add in a little T3 as well, because your conversion isn't the best I've even seen. And, as your FT4 rises, that could get worse. So, that's something I think you need to think about. Your conversion might improve as your nutrients improve, but that isn't certain, because they aren't all that bad to start with. And, considering how badly you've been served by your ignorant doctors, I think that self-treating wouldn't be such a bad idea! You couldn't do much worse! :)

  • Blood tests have to be at the very earliest possible, in order that our TSH is at its highest as doctors only appear to take notice of the TSH and adjust dose up/down in order to try to fit it into the range.

    I believe that doctors are completely unaware if they took the TSH 10 times in one day it would be different every time.

    Whereas we need it 1 or below and Dr Toft ex of the BTA and ex President of it suggests:

    6 What is the correct dose of thyroxine and is there any rationale for adding in tri-iodothyronine?

    The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l.

    In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

    But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

    This ‘exogenous subclinical hyperthyroidism’ is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).

    Even while taking the slightly higher dose of levothyroxine a handful of patients continue to complain that a sense of wellbeing has not been restored. A trial of levothyroxine and tri-iodothyronine is not unreasonable. The dose of levothyroxine should be reduced by 50µg daily and tri iodothyronine in a dose of 10µg (half a tablet) daily added.

    While taking both hormones it is important serum TSH is normal and not suppressed.

  • Thank you shaws for your reply and although I am hoping that the levo alone will work for me again, I have taken your advice on board should that not be the case.

    I am puzzled at the two most recent test however as to why although the TSH dropped from 3.7 to 2.7 that T4 and T3 remained the same. Do you know why this might be? I

  • It depends on when you have the blood test. If you had it taken 10 times in one day you will most probably have 10 different results.

    TSH is highest early a.m. and drops throughout the day.

    Thyroid Stimulating Hormone is from the Pituitary Gland and is not a thyroid hormone which T4 and T3 are.

  • Both of these test were done around 9.30am on an empty stomach and with no levo until after the test.

  • That's good. There's no problem about T4 and T3 remaining the same as before, only if they had risen too high or had dropped too low for some reason would you then look for a reason.

    It is always how the person 'feels' on a particular dose is the most important. If you feel good with no symptoms you are on the correct dose. Sometimes a small adjustment may be necessary.

  • Try and make sure your test is the earliest possible appointment. TSH follows a circadian rhythm it is highest first thing then starts to drop, it also drops after eating. It is normally recommended to test by 0900 at the latest but earlier if you can. An hour could mean the difference between you getting a dose raise or having it cut, especially as they seem to be dosing you by TSH only.

  • Hi Shaws re last para can you help explain why it is important for TSH not to be suppressed and does it apply to NDT too ?

  • Hiya greygoose, how polite are you with only 'duff endo'!! In the very short time I have become aware of this forum I feel I have learned a lot but still plenty to grasp! Its only after obtaining those blood results in the last few days and comparing them to the relevant dates in my diaries I am truly shocked at how the hospital referrals match up. Had I been on the right dose I really don't think any of them would have been necessary. I always make sure that my levo is the Mercury Pharma brand and this is written on my prescription. Past experience has taught me that mixing the brands is not good for me. I have enough levo for now to up it 25mcg and when I had the last TFT just over a week ago ordered by my endo but taken at my GPs I asked the nurse if it was possible she could get me a copy of the results before I see my endo on this coming Thurs. This she kindly did and I also asked her which GP might be of most help with this problem. She advised me who she thought would be the best person and has booked me in the week after I see the endo. Like I have said I think my endo will be more than happy now my TSH is at 2.7 and will happily wave goodbye! I have a copy of all the results with symptoms and hospital referrals along side. I have made it as simple as I can and will take it to show my GP, obviously he only has to check my records to see its all true. I also have printed out a copy of the article in Pulse magazine. Those along with the couple of notes on my TSH results about being euthyroid I hope will convince him to see sense. I don't think there is any chance of that happening with the endo because that will need her to admit that she's 'got it wrong'.

    So to answer your question about what I will do regarding meds, I intend to increase my dose by 25mcg from tonight and then pray my doctor see sense when I see him. I am hoping to get the right results on the levo alone because I think I would be too scared and worried about finding a continuous and safe source online.

  • Dr Toft (Pulse Online article) is an ex President of the British Thyroid Association but you can also throw in that he was Physician to the Queen when she was in Scotland :) His recommendation is a TSH:-

    The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l.

  • shaws Thanks shaws, sorry I clearly didn't do my homework! I hope I've got it right this time as I don't seem to be able to see your reply in full.

  • Hi,

    I think a lot of people (myself included) feel well when their TSH is around 1.

    I'm

    Not surprised you didn't feel at your best with a TSH of 0.1 (suppressed) and very unwell with a TSH above 2.

    I wouldn't worry about the T4 and T3 levels too much, they will fluctuate a lot according to time of day, what time you took your levothyroxine, and all sorts of other factors. Also when the body is short of T4 (TSH above 2 ish) it's quite clever at trying to maintain a kind of minimum level (I imagine, by making converting less to T3, but to a certain extent it's a mystery - tuning everything down?). So a higher TSH doesn't necessarily go with that much lower T4 levels.

    It looks to me like 75 mcg of levothyroxine is too little for you, and 100 mcg is a little too high.

    You probably, like me, need to experiment with doses in between. Ask to be prescribed 50 mcg pills and then you can break them into quarters so as to get +/- 12.5 mcg adjustments. And you can take an extra +12.5 mcg on alternate days so as to get an average +6.25 mcg.

    Or you can take your uk prescription to France (as I do) and buy packs of 25 mcg pills which are scored so you can easily break them into quarters (6.25 mcg).

    My ideal dosage to maintain a TSH of 0.8 at which I feel well is 93.75 mcg!!! (I get that by buying 125 mcg pills in France and taking 3/4 of a pill per day)

    At 100 mcg my TSH is suppressed and I get all sorts of symptoms - carpal tunnel syndrome etc.

    And at 75 mcg I get seriously hypo symptoms and life just isn't worth living.

    Tiny adjustments add up and make a difference! But uk doctors are completely ignorant of this (French endos understand though!).

    Zoë X

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