Newbie who is looking for a little guidance

Hi to all

I am a newbie to this page and my new found "friend" Hypothyroidism. I have felt ill for a number of years on and off and have eventually been given the diagnoses. I have read plenty on the net about the condition and find so many conflicting and negative things that have been written I'm now lost in what to believe and what not to!

My symptoms are headaches, very painful feet, ( sometimes find it difficult to walk) muscle cramps, muscle pain ,extreme fatigue, very blurry vision, insomnia, hot sweats, and that's just a few. Today I have started my medication which is Levothyroxine sodium 50mcg all I have been told by my doc is that my count was 34 (so unfortunately cant give any more info on that), to start the tablets and remember to make an appointment to go back for a blood test in 3 months, I would love to here from any member's that could help me and advise me on how to make sense of all that is about to commence in my life.

With many thanks

Last edited by

5 Replies

oldestnewest
  • I would suspect that the 34 refers to your TSH level. By any standards that is high. I can well believe that you have found conflicting info on the web. Just be reassured that many (the majority of people) do very well on levothyroxine treatment, so hopefully you will start to feel better soon. The people on the internet who grumble (like me) are those who don't do well on levothyroxine or find it impossible to get a diagnosis and treatment, and we come on forums like this to get help.

    The only thing I would question in connection with what you have posted is the 3 month wait before getting a blood test. Most people reckon that blood tests should be done every 6 weeks and dosage adjusted in response, until symptoms are relieved.

    There are two ways to take levothyroxine for best effect - early morning dosing or late evening dosing.

    If you prefer morning dosing, take your levo as soon as you wake up and drink a big glass of water with it. Don't eat or drink anything else for 30 - 60 minutes. Also, if you take iron supplements, leave 4 hours after your levo before taking iron. I think there may be an issue with other supplements too, but I always forget which ones.

    I'm not sure of the routine for evening dosing, perhaps someone else can help with that.

    Many people, after years of untreated hypothyroidism, have various nutritional deficiencies. You should ask your doctor for blood tests for vitamin B12, vitamin D, iron, ferritin and folate. Make sure you get copies of ALL blood tests you get done, including the reference ranges, and start keeping a history of your symptoms, results, medications and supplements. Your doctor is likely to say that results are fine if they are anywhere in the reference range, but hypo people need results in the optimum range to feel well, not just anywhere in the reference range. Post any results you get here for feedback if you don't feel well.

  • Jayc, welcome to the forum. Can you contact your GP receptionist to ask for a print out of your recent thyroid function results with lab ref ranges. It's good practice to do this after your GP has reviewed your results so you can monitor your own condition.

    If 34 was your TSH then it is very high. Normal practice is to have a repeat thyroid function blood test 4/6 weeks after starting Levothyroxine and 6 weeks after subsequent dose increases or decreases. When dose is stabilised and TSH just above or below 1 then repeat blood tests should be done six monthly and eventually annually.

    50mcg is a low dose which may relieve some of your symptoms in a couple of weeks but will almost certainly need increasing.

    You should also ask your GP to test ferritin (iron store), vitamin D, B12 and folate. Hypothyroid patients often become deficient in these in the year prior to hypothyroid diagnosis and these also cause pain, cramps, fatigue and blurred vision. When you have your results with lab ref ranges post them in a new question for comment/advice. Please do not accept your GP telling you results are 'normal' we need them to be optimal with ferritin 70-90 and the other others high in range.

    vitamindcouncil.org/vitamin...

    b12deficiency.info/what-to-...

  • Welcome. Firstly to say that I was diagnosed 33 yrs ago and am still here, so try not to second guess the future. You may find that you are one of those for whom Levo (T4) is fine, and if it isn't the optimum treatment over time, there are other routes to go down. As humanbean says, it's likely that the blood result you refer to, is your TSH. Many people find that it needs to be around or below 1.0 for them to feel well. Others like me feel better when it is suppressed. Which brings me to the first important point - to take responsibility for our own health we need to have accurate information about our condition which means as a minimum having all blood results and their lab ranges (different labs use different ranges). Drs interpret normal as being anywhere within lab ranges, but we need to have optimum levels specific to ourselves rather than a generality. It is recommended that you take Levo an hour before, or two hours after eating, whether you take your tablets morning or evening. Also as a generality, two hours away from supplements and other meds, and four hours away from iron. There are a number of foods considered to be goitrogens and should be eaten

    only in moderation , and greens especially should be eaten cooked. Soy is generally to be avoided although different forms are better than others. Three months is far too long to wait for a further blood test, 6 wks is generally considered the optimum. You may find that if waiting 3 months you begin to feel better then dip again as it is possible you will need a greater dose than 50mcg. There are a number of useful books you can buy, or they can be loaned from ThyroidUK for the cost of the postage. Raise any questions and concerns here though, as there are many folks here who are far more knowledgeable than many GPs and Endos.

  • 34 will br TSH and no wonder your not feeling well it should be below 1

    as for going back in 3 months it should be 6 weeks max

    also its vital you are tested for

    Thyroid Antibodies

    Free T4

    B12

    Cortisol

    Vit d3

    magnesium

    Feritin

    Folate

    Go back and request these because without all of them being at OPTIMAL not NHS "normal/in range " you cannot correctly convert the T4 in levothyroxine into the T3 your cells are screaming for

    Your symptoms are all classic hypothyroid

    You are likely to need to take iron and 500mg vitamin C 4 hours away from the levo

    and its wise to start taking NOW a really good multi vitamin at bedtime

  • Welcome Jayc

    There's some helpful suggestions above, here's a newbie post which may help (I think the links still work)

    healthunlocked.com/thyroidu...

    Best wishes, Jane :D

You may also like...