I take my levo dose of 75mcg and I am desperate to feel better but I just seem to feel worse. I have a gp appointment on Tuesday and I really want to tell him or her that I feel too unwell to work and that I have really just been going to work to keep myself going pretty much. Any idea when I will feel a hundred per cent well again? My brain just doesn't want to work and feels dull/heavy, making mistakes in my job, ears ringing and feeling cold and tired. I was diagnosed in 2013 and I am 34 years old and my endocrinology consultant is aware that I am considering pregnancy at some point in the near future. I have results for thyroid from this week.
Thanks
*TSH 9.3 MIU/L (0.2 - 4.2)
*FT4 10.7 PMOL/L (12.0 - 22.0)
FT3 3.3 PMOL/L (3.1 - 6.8)
*THYROID PEROXIDASE ANTIBODIES 376 IU/ML (<34)
*VITAMIN D 25 NMOL/L (25 - 50 vitamin D deficiency)
*FOLATE 2.31 NG/L (2.5 - 19.5)
VITAMIN B12 242 PMOL/L (190 - 900)
FERRITIN 16 NG/L (15 - 150)
I take folic acid since Nov 2016 and vitamin D3 800IU since Dec 2013
Written by
Cardella
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Have you got the blood results you could share? Limited NHS tests, or private with full thyroid ( TSH, FT4, FT3, total thyroxine, two autoimmune antibodies plus folate, ferritin, b12 and vit D)? If you feel bad and your dr. hasn’t, or won’t, do all these then consider a private lab test. Your GPs should give you ‘sick notes’ to have time of work to improve your symptoms! 75 mcg is still a small dose for most.
Thanks for adding results. You are very undermedicated, so you need another 25 mcg levo, then retest 6 weeks later, then add another 25 etc.....ideally your TSH needs to be 1 or under, and active FT3 over 5-6. Yes you have Hashimoto’s Disease with raised TPO antibodies ( have you tried going gluten free for 3-4 months to see if this lowers your TPO?). Unfortunately one of the characteristics of Hashimoto’s is poor gut absorption and consequently low nutrient levels....all your 4 folate, ferritin, b12 and vit D results are very low, despite taking some folic and vit D supplements. These in their own right can be giving you symptoms like tiredness, ringing in ears etc, but also low levels hinder good thyroid health and conversion of T4 to T3. Whether your dr. will accept these private results is questionable ( he/ she should , they use the same labs as NHS regularly)...your dr. should pick up the D, folate and ferritin as nearly deficient...even see why they are so poor, with greater tests like anemia, or offer injections instead of pills. However you might not get much help, or not the right doses. The vit D dose you take now is very very low...I suggest you go onto liquid based drops or spray with vit K2, to bypass gut. Look up old posts of Seasidesusie’s she is excellent on doses, brands etc...I am away from my book that I have over the years kept such info. at the moment. Good luck for Tuesday. And no, get a sick note...stress of work will make everything seem worse, if not actually making it worse.
Am I wrong to request a sick note at the appointment? I feel like a hypochondriac in doing so.
I'm an agency worker, too. My current assignment is due to end in 2 months and to me it won't look good for my own record if I'll be off sick just before my contract is up.
I've done a good job since being there - I've been there for about 6 months and for me to suddenly take time out for myself feels wrong but is probably because it is unheard of and someone I rarely ever do.
My endocrinologist said she is really sorry I feel so bad and hopes I'll recover soon. I am hoping my GP will take the same attitude when I see them.
I am not surprised that you are feeling unwell 🤒 Your results show that you are under medicated. Your TSH is far too high for a treated person, your free t4 is below range and your free t3 is barely in range. I would imagine that your G.P will increase your Levo by 25mcg and retest in six weeks. It would not be unreasonable to request a sick note to give you a chance to re-charge. Hopefully the increased dose will help you to return to better health.
Thank you so much for your reply Wildbird. I felt like I was going mad and that for me to request a sick note would be unreasonable. Unfortunately the GP has not acted on these results but my endocrinologist has, since they were run by the hospital I had the bloods drawn from and they went straight to my endocrinologist. I intend to go to my appointment next week about my vitamin D and folate levels which I am sure should have improved but have not.
I have also been upped to 75 mg in the last few months after increasing weight gain, fatigue, muscles aches etc. Was also diagnosed in 2013 and have managed until now. I feel no better either and have just had increasing palpatations instead. So frustrating! I feel your pain. My ferritin is also pretty low at 19 and I have not had periods for 6 years with having been on the depo provera. Cortisol is also low at 1.5 but had the synacthen test which was normal, so Addison's disease has been ruled out.
I am at a loss at the moment! Never seen an endocrinologist.
Thanks for this. I am getting a short synacthen test because the endocrinologist suspects I have Addisons due to rashes all over my body and face, losing weight, craving salt, drinking lots of water, dizziness and whooshing in head when standing. Am nervous about the test though.
You’ll be fine with sst, I’ve had 3 & you need to test for Addisons, I was exhausted after mine & in bed but I had one & felt great, make sure it’s done between 8-9 too late in morning is waste of time. I felt sick & flushed once but not everyone does.
It is often the next step after an abnormal short synacthen test. And possibly an MRI or CT scan. You do not want it if not forced to have it. It is horrid and I was ill for several days afterward.
Have you been back to your doctor.? If you still feel unwell you probably need an increase in meds. From info on here you should have bloods done every 6 weeks until you are on correct dose where you feel well.
Oh no, I am sorry to hear you are going through that! I had the test done after experiencing feeling faint and my BP dropping on standing, very fatigued, muscle aches and drinking lots but my test was luckily normal. The test itself is fine. It consisted of a baseline blood test followed by a ACTH hormone injection then a blood test 30 mins later where is went from 1.5 to 5.2. I have read that they usually do another test at 60 mins but I did not have that. You may feel a bit flushed, nauseous and dizzy at first but that should pass quite quickly.
Wow, your folate is pretty low. You might be undermethalated. If it were me- and it is-I'd invest in some methylfolate and see if that helps. if you're under methylating no matter how much thyroid you take you're going to feel like crap.
Additionally I find levothyroxine to be the freaking Antichrist-because it caused horrible reverse t3 in me. I have to have some cytomel/ t3 in addition to my natural desiccated thyroid.
I hope your doctor listens to you and is illumined enough to know what's wrong and what to do.
You're folate deficient, B12 isn't great either & taking folic if it was before resting B12 can mask deficiency. Your Vit D & ferritin are on the floor too. Have you been tested for coeliac? I have it & don't absorb, again anti body test isn't always the best. Were you taking any B12 before that test? If you're free of B12 you could ask for intrinsic & parietal cells tests too.
Can I ask Cardella, how you got to see an endocrinologist? Is it NHS? I hope you do not mind me asking.
I was diagnosed with hypothyroidism 6 years ago and have never been referred despite asking because I have been so up and down with symptoms, particularly lately. I therefore, do not know why I have it and I also have autoimmune diseases in my family.
It is very common for autoimmune diseases to run in families swill90. I am not sure that is a reason for a referral to an endo. It appears that being up and down with symptoms is not a reason for referral where I live. I think that having autoimmune thyroiditis makes it inevitable you will have ups and downs. You may get lucky and get a referral. I have been told that despite having underactive thyroid for 55 years and still having symptoms, along with return of early symptoms including enlarged tongue which increased levo is not helping that I don’t qualify for a referral. I don’t have antibody problems. Perhaps thst is why I cannot be referred. xxx
Thank you for this. I think it is because I am going around in circles with my GPs and feeling no better after feeling particularly poorly lately (for around 8 months now) despite the GP finally trialling an increased dose. I am now the heaviest I have been after managing for years and my TSH higher at 2.93. My symptoms just seem to have gotten worse and I wonder if now an endocrinologist can help as I just seem to have the same test results without any resolve.
I am not sure if I have antibody problems, it would just be nice to know what type I have and to finally see an endo who can do more tests and maybe resolve me feeling so rubbish lately.
Sorry to hear you've been going through that for so long!
I suspect you do have antibody problems which indicate autoimmune conditions. If your GP won’t test, do as so many of us do get tested privately. At least then you will know. I wouldn’t hold my breath for a referral to check for autoimmune thyroiditis. I doubt that is a financially sound choice.
I suspect I will have to start self medicating soon. I am not alone in that battle, I was really well on ndt. Have low T3 but of course no NHS testing allowed for that for GPs. Take care
I just wanted to be referred as levo has been increased, and 4 months later, I actually feel worse so wondered if they may suggest a different type and maybe do something more rather than the GP saying its normal and they are happy with my blood test results. However, I am being enlightened by you guys so really appreciate it about other things to consider!
Tbh I am just a little lost, as I am sure you have all felt too and I just want to get further than having the same tests with the GP and nothing really done.
Unfortunately I am a student doing second degree which is 5 years long and I have to pay all my fees so that is why I haven't gone down the private route yet. Only now finding out about private tests too so will look into that if I can afford it.
I totally understand the cost being prohibitive for you. At the other end of the spectrum I am now a pensioner! Stick at your studies, all worth it to get a good job, means a better pension, and you can really enjoy retirement. My husband and I both glad now we are this age. Push your GP for antibody testing as you have family history.
I’ve been off NDT for 6 weeks for NHS testing but pretty pointless because they won’t do T3 but be interesting to see results. I felt good at start of it but now not so much, it could be adrenals & menopause of course, it’s hard to work out.
It’s no fun is it? I think it’s the labs who are the blocking point in testing no matter what GP asks for. The lab where I live test tsh and if it is in range no further tests done. If tsh out of range they will test t4, if it is in range no further testing. If t4 is also out of range then T3 will be tested. A new GP has joined the practice I use and he has just requested tsh,t4 and t3 for me. I think he will be disappointed!
I am really confused why you are off NDT for testing? Surely the point is to test to see how you are progressing on medication? Why have they made you stop?
Sorry for late reply, wasn't feeling great & tests not going up so was suggested maybe add T4 to NDT & the Dr suggested a break to test levels. Get results later on but now major bladder probs going on too never ends so just started tablets for that & trying to work out can't be far from toilet so no fun.
Gp will only prescribe to get vitamin D to 50nmol. Aiming to improve to at least 80nmol and around 100nmol may be better, but you will need to self supplement for that
Vitamin D mouth spray by Better You is good as avoids poor gut function. It's trial and error what dose each person needs.
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
B vitamins best taken in the morning after breakfast
Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).
Or Jarrow B-right is popular choice, but is large capsule
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
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Feel like I am going mad
Help needed with how I am feeling.
Hypothyroid, fat, no energy but I am not a sufferer of CFS!
I feel like no one listening.
Feel like I have no quality of life anymore.
