I'm new here but have joined as I've just reached a point where I'm so frustrated and wanted some advice and support. I was diagnosed as hypothyroid last August and have been taking Levothyroxine since then. I am now taking 125mg per day and my blood tests are apparently 'normal'. However, almost parallel with taking the thyroxine I have steadily felt worse and worse. When I initially went to the doctor for blood tests last year I didn't feel too bad at all - in fact I was having heart palpitations, and when they tested for what could be causing that just happened to spot the hypothyroidism.
Since then, particularly since January this year I have been feeling worse and displaying more signs of hypothyroidism. My hair is coming out loads more than ever before, I'm clearing up handfuls every day. My weight has increased despite me actually altering my diet to be much healthier in an attempt to feel better, and increasing the amount I exercise. I am frequently bloated and constipated, which I've never really been before - it feels like my digestive system has just slowed down. My menstrual cycle became progressively irregular from about Nov onwards; it is starting to regulate but it is still not what I would normally expect. This is particularly upsetting as my husband and I had been planning to start a family this year; because of this I have been monitoring my basal body temperature to track my cycles, and I have noticed that it is really low - most days under 35 degrees C (between 35.8 - 36). I also feel tired and sluggish, and frequently depressed - although I think I may be feeling low primarily because of all the other symptoms and the infertility. AND I am still having the heart palpitations which took me to the doctors in the first place! (for which I was prescribed a very low dose of Propanolol to take when needed)
Anyway... I have finally got the courage together to go to the doctors and tell them that I feel worse since taking the Levothryoxine and that it feels like I am still (if not more?) hypothyroid. I have an appointment next Tuesday.
I have read a lot online and in other forums about people with similar experiences, and the issue of T4 not being converted to T3 - don't know if that's maybe what is happening with me?
I'm quite nervous about going to the doctor, and anxious about what he will say. I really don't want to get sent away. Does anyone have any advice?
Thanks so much.
Naomi
Written by
katacharin
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1) You may be under-medicated. You need to get copies of your blood tests, including the reference ranges, then post them on here. Once you are within the reference range doctors claim you are well and your results are "normal". But for hypothyroid people the results need to be at the right point in the reference range for them to feel well - for TSH this is around 1.0 or lower, for T3 and T4 it is in the top quarter of the reference range.
2) You might not be converting T4 to T3 very well and the T4 may just be pooling in your bloodstream. This makes your results look good to the doctor but makes you feel poisoned. You would really need to get Free T3 tested - if that is low in range or below the range, and Free T4 is high in range, then you aren't converting well. To achieve good conversion from T4 to T3 it is essential to have good nutrient levels. The most important things, which your GP should agree to test for you, are vitamin B12, vitamin D, iron, ferritin and folate, although a lot of doctors won't test iron, and some are reluctant to test anything. Once you get these tested, get printouts of your results including the reference ranges, and post them on here. Other important nutrients are selenium, zinc, magnesium and iodine (don't rush into supplementing iodine - it is only necessary in the event of a deficiency.)
3) You may have Hashimoto's Disease - an autoimmune condition which is responsible for about 90% of hypothyroidism cases in the UK. To find out you would need to get antibodies tested. Ask your doctor. If you are positive for antibodies then for many people in this situation going gluten-free helps a lot.
4) Candida overgrowth - this also makes hypothyroid people feel much, much worse, although I've forgotten the reasons behind it and what to do about it, sorry. Getting rid of candida is an extremely good idea.
5) You may simply not tolerate levothyroxine - some people just don't, no matter how much the medical profession would deny it. You could try getting a trial of T3 from your doctor, but I don't hold out any serious hope that you would get it. You would probably need to self-medicate. Another option is NDT - natural dessicated thyroid - an old-fashioned treatment that works for lots of people, but the medical profession and the pharmaceutical companies hate it. But NDT, like T3, is a treatment that people usually have to self-medicate with.
With regard to nutrients... I forgot to mention that good levels of vitamin C are required too.
6) Adrenals... How could I forget these? You need good levels of cortisol too. This can best be tested with a four-part saliva test, but it must be done privately. The NHS isn't interested unless you have Addison's Disease (extremely low cortisol) or Cushings's Disease (extremely high cortisol). With cortisol, you need levels in the normal range, not a bit over or a bit under.
Please read this page then take a look at the other adrenal info on this site :
Don't be nervous of going to the doctor, many of us have the same problem with levothyroxine, i.e. beginning to feel more unwell once we have taken it for a while. Many doctors don't really understand - as well as diagnosing by the TSH alone and believing if we're in the 'normal' range everything is fine they think there is no reason why we should still have problems. Most of us need a TSH of 1 or below, or suppressed and medication shouldn't be adjusted once we are on an optimum and feel well just because the TSH is 'out' slightly.
Do not take your medication on the morning of your blood test (and have it as early as possible) - take it afterwards as it skews the blood tests. You take levo with one glass of water first thing and don't eat for approx 1 hour as some foods can interfere with the uptake. If you have eaten you must leave 2 hours either side of taking levo.
Always get a print-out/copy of your blood test results with the ranges, for your own records and so that you can post them here if you have a query. Also ask GP to test Vitamin B12, Vit D, iron, ferritin and folate as we are usually low in these.
Hi Kat, it is quite a shot in the dark without further testing which they are very reluctant to do within the NHS. Just read some of the posts that resonate with you to see how confounding it is to be ill and ignored by GP's but...... don't let it stop you from trying to get well.
Some of the reasons for your condition right now have been mentioned and I tend to agree that perhaps your adrenals cannot cope with the thyroxine. It CAN present with palpitations.
I think another problem other than good thyroid treatment may be good adrenal treatment as well. A lot of us are trying to figure it out on our own since many of the supplements and adaptogens do not need prescriptions. But try reading up regarding these and see if you relate.
Thanks. I have been reading a lot of that stuff for a while and I guess that's why I'm a bit apprehensive about going to the doc. A lot of it really resonates with me. It seems like so many people around the world end up in this position. I have been trying to do what I can with diet and supplements to help myself really, but I haven't seemed to notice much difference. I do feel that some of the herbal supplements I've introduced have helped to regulate my menstrual cycle, but not much more. I'm not really in a financial position to go private and wouldn't really know where to begin. I instinctively feel that stress and my adrenals play a key part; I have suffered with anxiety historically for a very long time, and am aware of the massive knock on effect that can have on the rest of my body. The doc to this point has put the heart palpitations down to anxiety, but they come at all random times - even when I'm feeling very calm and not anxious at all!! I really do just want to feel well and back to my normal self.
I guess first step is seeing what the doctor has to say and take it from there. Like so many people I find it hard to be assertive with the doc.
Yes, being assertive usually makes them more defensive. I've taken licorice root and even licorice tea can be effective if you haven't tried them. Silberian Ginseng also is something you could give a trial to see if it helps. Your own instincts may be better than any doctor's.
Hi, Just a note about anxiety.... I had anxiety attacks when I was a teenager. Horrible and very frightening. My lovely Mum took me to a hypnotherapist who also looked at my diet. She recommended supplementing my diet with B vits (sorry, can't remember which now, it was a long time ago, but a good health food shop would help you), cutting out all caffeine and artificial additives, as well as the hypnotherapy. The techniques used in the hypnotherapy taught me to be able to relax fully and consequently if I felt an anxiety attack I knew exactly what to do to stop the anxiety from escalating. This has helped me all my life (now 50!) to deal with many stressful situations and I would thoroughly recommend it.
I too am hypothyroid and suffer with palpitations. I have been lucky and got referred to an NHS endocrinologist who is so much more knowledgeable than my GP about thyroid issues.
I saw him yesterday and feel that although we don't have all the answers yet he is listening to me! My advice would be try to get referred to a good consultant (there must be a list through this site somewhere?)) and get help for the anxiety. Last year when the palpitations got really bad for me the hypnotherapy techniques were the only thing that got me through. Good Luck!
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