newly diagnosed hypothyroid and confused

I was diagnosed 9 weeks ago with hypothyroidism after practically begging for blood tests to be done. 

I was started on 25mcg of thyroxine and this has been gradually increased now to 75mcg following lastest blood results of tsh of 6.25, T4 14 (on 50mcg). I have been on the new 75mcg dose for a few days and i dont feel greatly better as yet. I spoke to a doctor on friday who said that she would increase to 75mcg and test again in 8 weeks time. 

When I was on 25mcg my TSH was 5.5, so increasing the dose it has actually risen not fallen as it is supposed to. 

I have had blood tests for TPO abs and they came back as 40, so I assuming I have hassimotos.

I went to see my doctor today as my sick note runs out on tuesday next week and as I am still very tired, tinitus is screeching, i dont feel well enough to return to work as yet. 

I work full time, I am a single parent and have three small children, I could not possibly go back to work yet.  I sleep all night, drop them at school come home and go to bed. I am exhausted. I have noticed some improvement since weeks ago, but it is small.

Today My doctor signed me off for another month, but said he was having trouble doing this as medically I am now well. I was very annoyed at this comment, none the less he signed me off for another month.

I feel awful. My TSH is 6.25, i realise this only just out of range, but i feel so tired, and now as my GP said this, I also feel like a fraud. 

I also have to wait another 7 weeks for another blood test, I feel really tearful and supporting words would be welcomed. thankyou x

17 Replies

  • TSH can pick up after the first treatment, it is speculated that the levothyroxine wakes up he pituitary.  I'm not sure that is so but it happens.  More frequently, with autoimmune thyroid disease the thyroid is failing and it is quite likely its output has fallen since you were first diagnosed thus increasing your TSH.

    Your doctor is being over cautious with your treatment.  For somone in your situation he could easily up your treatment to 100 mcg now.  I'd be inclined to write to him now and ask for the increase, saying this is justified on your symptoms and current endocrinologist practise.  I get the impression he has little understanding of hypothyriodism.

  • thanks, at least I dont feel like I am imagining my feeling unwell now. I am really disapointed at the treatment i have recieved so far, and more so the lack of empathy. I am a single mum of three trying to work full time and look after three kids and then to be told i am medically well when Im not it IMO appauling. I will be changing GP as I am having a number of issues with this practice, hope its not out of the frying pan into the fire, but heres hoping.  I dont think my T3 has been checked just T4. will ask for a copy of blood test results am considering reffering myself to see a endocrinologist privately as I feel completely as if I am not being listened to at all.  thanks for your advice, have had vit d checked its low and im on high dose vit d

  • Ok your TSH should be about 1, so it's sky high, your FT4 needs to be about 18, (55-60%) if the range is 12-22, and your FT3 should be 6-6.2 (75%)with a range of 3-6.8 that said other nutrients you need to have checked are Vit D3 and B12 as these tend to be low with hypothyroidism. So you need to know your FT3 (free t3) levels too and the ranges. Vit D3 should be around 90 and your B12 needs to be about 50 below the top of the range! 

    What doctors either forget or don't get taught is that the TSH is a pituitary hormone telling the thyroid to produce more T4/3 as for your T4 at 14, is that T4 or FT4 big difference I would have expected your TSH to be lower if it's FT4@14 

    As for Hashimotos I'll bet you got that before hypothyroidism as is normal, plus autoimmune illnesses tend to come in more than one, a common one is Vitiligo, white patches of the skin. Hope this helps I suggest you copy and paste fir your doctor to help them learn too... 

  • thanks going to get a copy of blood results so i have more information i dont think t3 has been done x

  • Ok here's a very important reason you need your FT3 checked, you need to know if your converting FT4 to FT3 reason is some people have problems as they say making FT3 they can blame it on a made up gene defect called DIO2, 

    Now read this to understand the no defect in the genes, yes you may not be able to make FT3. You see that DIO2. Here's why there are in natural Dessicated thyroid hormone (NDT) not just T3-4 but T1-2-3-4 and Calcetonin, now T2 is needed to make Deiodinase this is needed to remove an iodine molecule from T4 to make T3, I believe they know how look at the gene number DIO2 and Deiodinase, and T2, do you believe in coincidences? In this case people in this situation need NDT natural thyroid... 

    I'm not medically trained but I read a lot, and I like to know the why, not just the fact of what is... Hope that helps 

  • Whilst some symptoms may go fast there is no quick fix and it was over 12 months before I began to feel nearly ok.Taking plenty of vistas well.

  • Your doctor is rather ignorant, I'm afraid. No way would you be well with a TSH that high. The TSH of a person with absolutely no thyroid problems is between 0.8 and 1.25. But, that's not even taking the Frees into consideration : FT4 and FT3. They are the thyroid hormones. TSH is a pituitary hormone, and rather capricious. Your TSH could be one, but your FT3 still on the floor. It is low FT3 that causes symptoms, not TSH.

    For the antibodies, do you have a range? Because ranges vary from lab to lab. It is normal (so they say) to have some antibodies, but if they are over-range, then you have Hashi's.

    When you are hypo, you usually have absorption problems with things like vit d and the B vits. So, it's best to ask for them to be tested : vit D, vit B12, folate and ferritin. If any of these are low, then that will make you feel very tired, too.

    I'm afraid you're going to have to do a lot of Learning. As you have probably noticed, you cannot count on your GP to know what he's doing when it comes to thyroid. You have to be able to stand your ground when he wants to do stupid things, like prescribing antiDs, or lowering your dose due to the TSH. The only way to get well with an ignorant doctor is to know your disease.

    Having said all that, 9 weeks is a very short time in thyroid terms. It's going to take a lot longer than that to get well - no matter what your doctor thinks! So, I'm afraid, you have to be patient, as best you can.

    Take care. :)   

  • tpo antibodies were 40 (so i dont think thats greatly hig) range was 0-33 i think x

    thanks for your kind words, makes me feel better

  • Even so, over-range is over-range. Remember that antibodies fluctuate greatly, so although they were only 40 on the day you were tested, they could have been 140 a week later. I think we can say you have Hashi's, and that will make you feel bad no matter how high or low the antibodies. :) 

  • I am sorry for how you feel but it's typical. We are so used to taking medication and feeling almost immediately better and that doesn't happen with this vile condition. I hope that you start to improve - do look at B12 Vit D and ferritin all of which need t be at optimum levels. There are some wonderful wise generous people on the TUK forum and on my experience they are happy to elp you when you need a hand.

    This is a tough journey. I wish you well xx

  • thankyou so much yes it is a vile condition, I have had failing thyroid on and off for years, since first child was born they never checked in any pregnancy thyroid hormone, but checked post delivery when i went in complaining of feeling tired all the time. Last one was 5.5 in july last year and was told it was normal, but they never checked TPO antibodies until recently. I am also annoyed with this as if they had of checked they may have seen autoimmune issues and started me on thyroxine sooner. Off to register with new GP tomorrow, sad to say it as I have been with this GP surgery for many years but enough is enough!!!

  • Just a couple of tips to add to the many other good ones here.

    Firstly - do make sure you take your thyroxine on empty stomach and do not eat or drink anything other than water, for an hour after. Some if us find taking thyroxine at night, just before bed, can work better (needs to be 3 hours after a main meal.) But we are all different. Some have tried it and prefer taking first thing in morning.

    When you get next blood test, best advice on here from patients (and some Endos) is to not take thyroxine for 24hours beforehand (save and take it straight after) and ideally get blood test as early as possible in the day (before 9am if possible) and only drink water beforehand. This will give the highest TSH result and help prevent GP's keeping you on too low a dose. 

    This link below explains quite well how/why we have to up the dose slowly frustrating as that can be. Taking too much or upping too quickly can make you feel even worse (been there myself)

  • thankyou so much that analogy with the sponge really was helpful, feel a little more reassured that My dr is not a bafoon lol! knowledge really is power!

    Ok I get it im now week 9 and dose has been increased (with me pushing) to 75mcg) but just now im only going to be feeling the effect of week 3 (25mcg, possibly beginning of 50mcg) so I really do need to stop pestering the life out of my Dr (lol) and wait the six weeks before having it retested again, thankyou for that I was going to push for a retest sooner but that has helped me to understand why i need to just be patient. 

    so in six weeks time (even eight) things should be much much better as long as i dont increase too fast and i think its fair to say 75mcg is a lowish dose so as long as i stop here for  a bit it will be ok :). 

    Thanks, :), I too have a lot to learn and tiredness does not help my temper lol, Still think he was lacking in a little empathy sayin i was medically fit, Im clearly not, BUT I will be. in time shssssshhhh  :).

  • Most people with low thyroid also have low B12 - and yes many of the symptoms overlap.  Your levels need to be around 1000 when Hypo so do not accept 'normal' from your GP when what they mean is - in range.

    The above website will tell you everything you need to know about B12.  What your Doc does not know about B12 can harm you.  We have to read and read to learn about our condition and not rely on Docs.  They only know what they learn at Med School and rarely keep up to date due to the pressures of work.

    I am not a medical person - just someone with Hashimotos and a B12 issue that was neglected by the Medical profession and of course my own limited understanding earlier in my life. 

  • Hope you feel better soon ... Does yr body get rid of excess b12 ... My doctor said mine was a bit high ... However , what they say is high may not be what we need !!! ... Wish had got my results ... Will ask next blood test few weeks and print them ... Many thanks once again 

  • You poor thing - GP has added to your stress levels and stress and thyroid problems are so Inter linked . When my kids were growing up I was on my own and it was incredibly tough - never mind adding a thyroid onto the equation . I do hope you feel better soon and find a more understanding GP 

  • The 25 mcg dose is only a very small dose but it also depends on your age and general health. It's not really to make you better at that dose but to get your body used to taking it a mind to make sure you don't get a reaction. If you read the Patient Information Leaflet you will also see it contains fillers to make it stable. You could find that these Fuller's upset you and in that case the pharmacist should be able to offer you an alternative. Someone has already explained the way to take it, that is very important and certain foods can interfere with it if you take them too soon afterwards. Also the 25 mcg can be actually less than your body produced before. Sometimes your body shuts down when it knows it is getting it elsewhere so that is probably why you actually feel worse. It takes about 5 weeks for that dose to reach its maximum in your body so you should be told to be retested after 6 weeks and will propbsbky need an increase. Increases are usually given in 25 mcg increments and sadly you can't speed this up! T4 has a half life so you use some of today's and some is left over in the pot so that's why I takes time to build up a dose increase. If you try to go too quickly you could swing the other way and become hyper thyroid and trust me that makes you feel bad as well. So with small increments you will arrive at the best dose for you. You might fibally find you are bed teen doses so alternate these doses, it fine to do that but any changes you make re test after 6 weeks to make sure you are on track  

    So be patient and stick to the rules  read all you can, always get a printout and post your results and you will get comments  always put the ranges on with your results as they differ from lab to lab and ask questions  nothing is two trivial  if you don't know the answer and remember we have all been there so we understand Read and learn! 

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