Just started trial of levothyroxine, now I'm worried

Posted , 7 users are following.

Having read all the posts, I'm a bit worried if I'm doing the right thing. Have all the symptoms of hypo (aching joints, sluggish, heavy irregular periods now anaemic, cold, hair shedding, brittle nails, etc) but could also be due to being anaemic or premenopausal, I'm 49 but feel like I'm 80!!  I first went to Dr with hives, which were coming every day, which I ignored and put down to a food allergy until my face puffed up!! Given antihistimes and blood test. My anaemia was discovered and slightly raised TSH. Iron tablets which I couldn't tolerate. Nothing to be done with TSH.   I went back to GP as all my symptoms pointed towards hypothyroidism. Had to push him to do another blood test for tsh/t4/t3 - TSH still risen but apparently not enough to give symptoms (don't know the numbers) but offeredme a trial of 25mg levo for 6 weeks and get bloods tested again. Took first tablet this morning with water and waited 1 hr before my morning cuppa, seriously hoping that I will start to feel normal again soon.

i read that certain foods should be avoided ie strawberries, peanuts, cabbage and fluoride toothpaste, can anyone tell me why?  Thank you, any help would be greatly appreciated.

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  • Posted

    Hi Jenny, you really will feel loads better once your thyroxine levels are right.

    Just one more thing, if you have low thyroxine levels you don't metabolise iron properly and vice versa. Are you having your Ferritin levels checked every time you have a blood test? Ferritin level needs to be 80-90 to be able to absorb thyroxine properly.

    • Posted

      Have a look at website tpa UK. There is an article there about being newly diagnosed with hypothyroidism.
    • Posted

      Hi Barbara, I did get the results last week regarding my ferritin, transferin and serum iron (I think)....only because when I rang for my blood test results (checking anaemia) the receptionist said those three were abnormal and I needed to speak to the Dr. I wrote them all down as they meant nothing to me and I wanted to investigate what the normal numbers should be, but after speaking to Dr he said everything was fine so I binned the lot. It has been a very frustrating journey to say the least! The Dr has treated can me like I'm a neurotic housewife and it seems that this is how everyone seems to feel with this disorder, what a shame. 
    • Posted

      Hi jw100,

      Go get your test results out of the bin! You are lucky to have a doc who measures stuff to that depth, most of them only do T4 and TSH. It is important to keep track of not just what your measurement is now but what  it was when you felt good or felt bad. This way you will know which way you should adjust your medications, increase or decrease. Ferritin is a blood cell protein which tells you how much iron is STORED. If you have a lot of it you are probably hyperthyridic, if you are down the bottom end of the scale, you are probably hypothyridic. At some point you may be told that you are not hypo because your TSH and T4 look OK. It is at that point that you need to start looking at other factors. 

    • Posted

      Hi MtVC

      Yes, sadly another element to worry about and you can throw in Seleniium as well since selenium is important in the conversion of T4 to T3. It is the T3 which gives you energy - which you probably know. This process and whatever iron/ferritn does, happens in the liver (if you have no or a defective thyroid). And then there is the absorption ability of the liver and in the gut, you may have all the good stuff floating around in your blood stream but if it can't get to your cells, whaddoyouknow? - HYPO!  

      What bothers me is that we are all trying to work out this very complex process while Endocrinologists have studied this for four years at university - and yet they have so little insight. They are relying on the AMA and ATA to come up with recommendations which only apply to a certain percentage of the thyroid "challenged" population. I am beginning to believe that there are not too many medics who can process this many variables at one time. At least this has been my experience.

      Emis Moderator comment: I have removed the link as it went to a "Page not found". If users want this information please use the Private Message service to request the details.

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    • Posted

      I was told the bit about the Ferritin levels being important by an Encrinologist back in 2004 when I was feeling particularly poorly. She said above Ferritin should be above 50, since then, I have been reading it should be between 70-90.  I took iron tablets for years to get my Ferritin level up (started at 3x200mg a day of Ferrous Sulphate, reduce to 1x200mg a day after a few months). It now seems to be staying about 110 without my taking iron tablets. smile 
    • Posted

      By the way, in 2004 my Ferritin level was 25.
    • Posted

      Hi Jenny, I have been told my iron is normal when I have actually been anaemic. The circumstances were my iron count was in range, but my Ferritin count was below 23. The nurse that told me, only looked at the iron count. At the time I was having trouble converting the iron to Ferritin. So I completely agree with LAHs. Ask for another printout of your blood test results, keep them and check them for yourself, against the range printed next to each value e.g. for TSH, my lab's range is 0.4 - 4.9 so I look to see (1) if my TSH result is in range (2) whether it is near the limit of the range and (3) whether it is higher or lower than last time. This tells me a lot more than just looking at the actual value.

      Also my experience validates what Catherine says about blood tests taking 3 months to accurately reflect the true levels, and also about the spikes (can be low or high, depending on whether you decreased or increased the dose). For example, if I increase my dose, my body seems to think 'whoopee' and spikes high, then it seems to think 'oh no, that wasn't as good as I thought it was, and spikes the other way (i.e. low), this seems to ricochet to and fro, with the height of the spikes gradually decreasing in amplitude. If you get a blood test done when you are experiencing a spike it will show an erroneously high level.

      From changing dose to the spikes diminishing to zero, seems to take about 3 months. I worked this out in 2004 - the literature caught up 10 years later. Ditto with the bit about a sizeable minority (15%) feel better if their TSH is at the low end of normal and their T4 is at the high end of normal. I am one of that minority.

    • Posted

      Mind you, you may be one of the 85% who has no problem at all! Many of the people on this site are in the 15% category so you will get a biased view that may not reflect your experience at all.
    • Posted

      Hi LAHs, I am going to ring the gP practice today and ask for print outs of all my blood tests this year, hopefully he'll be happy to do that. 

      I have been looking into other factors, namely a gene mutation called MTHFR. I sent a reply to you yesterday but it is being moderated as it obtained a link. But basically, my sister has tho copies of the MTHFR gene mutation C677T (so it is fairly likely I have it too) and it can cause a lot of problems with your liver and the methylation process leading to a toxin build up and in the end causing low ferritin (even when iron levels show normal) from high levels of copper and zinc. The link I sent explains it far better than I ever could buy it's an apparently common affliction which goes undetected. Thinking I may get a gene test, if the can test for this particular gene mutation. I know they've had a bad press so far as some of the results have been very misleading but maybe be worth a try. Everything seems to be so simplex my slow mind is having trouble taking this all in! 

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