Diagnosed 3 years ago

Hi, I am new to this and have really been suffering the last 6 months or so.

I was diagnosed back in 2013/14 after having most of the usual symptoms of hypothyroidism. I was Borderline and had to fight with my GP to even start the medication as I could no longer live with the symptoms. I was started off on 25mg, in the last couple of months I have had my dose increased to 50mg as I was starting to get the same symptoms reappear as they did when first put on the levothyroxine. I have since had heart palpitations, incredibly dry skin, feeling very down and stressed and feeling incredibly anxious and emotional.

I have been back to the doctors 2 weeks ago and had my blood tested again as my blood pressure was too high and having got the blood test results back I have been told to stay on the 50mg and be tested again in 3 to 6 months.

From this appointment I was signed off from work with stress as I have been struggling to cope and I broke down at the doctors.

Today I feel sluggish, my brain feels fuzzy, I feel sick and when reading this screen everything seems blurry. I have been experiencing migraines and my periods have not been as regular as normal.

Would love to hear if anyone else has experienced anything similar.

24 Replies

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  • SianMc2017 Please post your test results, with their reference ranges, for members to comment.

    To stay on a 25mcg starter dose for about 3 years and only just have it increased to 50mg is madness.

    Retesting should be done 6-8 weeks after starting Levo (and after every change of dose) and an increase of 25mcg made, retest, increase, etc until symptoms abate. You appear to have been dreadfully neglected.

    When having thyroid tests always book the first appointment of the morning, fast overnight (water allowed) and leave off Levo for 24 hours (take after blood draw). This gives the highest possible TSH which is what is needed when looking for an increase in dose or to avoid a reduction.

    Always take your Levo on an empty stomach, one hour before or two hours after food, with water only. Any other medication and supplements should be taken at least two hours away from Levo.

  • Hi SeasideSusie, I have never been asked to fast for a test and I don't know if I was neglected due to being borderline? I am only now really reading up on all this so I really appreciate others comments.

    Pathology Investigations

    Liver function tests

    Serum total protein level 71 g/L [64.0 - 83.0]

    Serum albumin level 47 g/L [35.0 - 52.0]

    Serum bilirubin level 10 umol/L [< 21.0]

    Serum alkaline phosphatase level 52 iu/L [35.0 - 104.0]

    Serum alanine aminotransferase level 14 iu/L [< 33.0]

    Thyroid function test

    Serum TSH level 4.09 mIU/L [0.3 - 3.94]

    Outside reference range

    Serum free T4 level 16.2 pmol/L [12.3 - 20.2]

  • Your TSH should be 1 or lower - yours is just over top of range as some doctors mistakenly believe that's o.k.. No Free T3 has been taken and you are probably low.

  • Sian, doctors won't tell you about fasting, it is a patient to patient tip, along with the other things I mentioned, to get the highest possible TSH. TSH falls after eating and is also lower later in the day.

    Regardless of being borderline, your GP made the decision to start you on Levo. The aim of a treated hypo patient generally is for TSH to be 1 or below and FT4 and​ FT3 to be in the upper part of their respective reference ranges if that is where you feel well.

    Take a look at ThyroidUK's website and Treatment Options here thyroiduk.org.uk/tuk/about_...

    It refers to a book written by Dr Toft, leading endocrinologist and past president of the British Thyroid Association and says:

    "According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above."

    That book is available from Amazon or pharmacies for about £4.95.

    Dr Toft also states in Pulse Onine Magazine,

    "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

    In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

    But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

    This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

    A copy of that article is available by emailing louise.roberts@thyroiduk.org.uk

    If these are your latest test results

    Serum TSH level 4.09 mIU/L [0.3 - 3.94] -Outside reference range

    Serum free T4 level 16.2 pmol/L [12.3 - 20.2]

    then your GP was correct to raise your dose. However, ifyou have had side effects you might be sensitive to dose increases and need to do it gradually. You could halve the increase, use a pill cutter and take 37.5mcg a day and see how that feels. If all goes well then you could get up to 50mcg eventually.

    Are you still on the same brand of Levo or has the brand been changed? Some people do better on one brand than another due to fillers, so a brand change could have caused a problem.

    Also worth testing are Vit D, B12, Folate and Ferritin. All need to be optimal (not just in range) for thyroid hormone to work properly.

    Nothing particularly stands out as wrong with any of your other tests but you can check them​ out here, just put the name of the test in the search box labtestsonline.org.uk/under...

  • Thank you, since being put on 50mcg the brand has changed to one I haven't had before (actavis) I was also on Vitamin D tablets last summer for 3 months so I don't know if maybe I need some more supplements? I was put on these and it was not investigated again after I finished the course of tablets.

    I am seeing the doctor tomorrow as this she wants to see how I am with regards to being signed off so I will hopefully be able to ask her more about my test results.

    I honestly just want to feel better, it is really affecting my life. I spent 2 to 3 hours clearing out our garage at the weekend with my husband and it completely wiped me out for the rest of the day. I am not sure if this could be something else, I have recently been looking into CFS.

  • You absolutely do not want a diagnosis of CFS. Nor of fibromyalgia. They are dead-end diagnosis, and forever after, you will just be told that all your problems are down to that, and your thyroid - and everything else - will be ignored.

    For a start, there is no proof that such a disease even exists - there is no blood test for it, and the symptoms are the same as under-medicated thyroid. The difference being, there is a treatment for thyroid, there is nothing much for CFS.

    You concentrate on getting your thyroid correctly treated, and never, ever, even mention CFS. At the moment, your TSH is too high, and whilst your FT4 is just about mid-range, your FT3 is probably too low. And, it's low T3 that causes symptoms.

  • No, don't get saddled with a diagnosis of CFS, that's the last thing you want. I'm betting this is all down to your thyroid, you are under treated. Every cell in your body needs the active hormone T3. Levo is giving you T4 which is a pro-hormone and is inactive, it has to be converted by your body to T3. Ideally all thyroid tests would include FT4 and FT3 so we'd know that we're converting T4 to T3 well enough. Unfortunately doctors don't seem to get this!

    First thing you need is increased medication (gradual increases) to get your results where they need to be for your symptoms to abate, as mentioned above.

    I would also suggest that you ask to go back onto the other brand of Levo if you were better on that.

    If your Vit D was low enough to be prescribed D3 then you must have been in the Deficiency category. Once treated with loading doses you should be on a maintenance dose for life. It was very remiss of your GP not to follow that up.

    As your were low in Vit D there is every chance that your other nutrient levels could be low too. So ask for those four tests to be done then come back with the results for comment.

    These are the optimal levels that are needed for thyroid hormone to work properly

    Vit D - 100-150nmol/L

    B12 - very top of range, even 900-1000

    Folate - at least half way through it's range

    Ferritin - at least 70 for thyroid hormone to work, half way through range is recommended, and for females 100-130 is best.

    Your GP won't know this because they're not taught nutrition. Most members​ here supplements nutrients to maintain these levels themselves.

  • When you see GP tomorrow ask that they test your vitamin D, folate, B12 & ferritin. Also if you have not had thyroid antibodies tested, could they be tested too.

    If GP asks why, you can say you have been in contact with NHS recommend Thyroid suppport group, who advised these be checked as they are commonly low with thyroid issues.

    Make sure you get full results including figures in brackets (show ranges).

    Come back here and in a new post put your results.

    If your vitamin levels are very low this may be why you are having trouble tolerating a much needed increase in Levo.

    Or as SeasideSusie suggested as you have changed brands, ask to go back to original brand, but still at the 50mcg.

    If you find you still can't tolerate 50mcg, you can alternate 25mcg one day and 50mcg the next. (Averages out at 37.5mcg, but no need to cut pills)

    Give body at least 6-8 weeks to get used to this before retesting, and probably stepping up dose then to full 50mcg.

    If we have been hypo a long time, or under medicated then increases may have to be very small and slow.

    Read all about thyroid at Thyroid Uk - the main site of this support group

    thyroiduk.org.uk/tuk/index....

  • I support all advice about rejecting CFS. I was told by my GP that unless I agreed to attend the CFS clinic he wouldn't refer me to see an endocrinologist! It's a farce, I was not being properly medicated, I do not have CFS and​thanks to this forum I am improving my health!

  • I honestly cannot thank you all enough, I have learnt so much from you all today you have been so helpful.

    I have written down all that I need to ask the doctor tomorrow so that I don't forget, I am terrible at remembering and taking in information at the moment.

    This has really had a massive impact on my life the last 6 months and I have felt really lost and alone. I just didn't know what to do and was questioning myself, do I just need to suck it up and get on with it. If only it was that easy, I find it hard to get motivated each day to do anything.

    I am so glad that I found this forum to talk to people that truly understand what it's like.

  • Sian, please let us know how you get on with your doctor. Don't be surprised if she dismisses what you say. You can tell her that you have taken advice from the thyroid charity ThyroidUK which is NHS Choices recommended source of information for thyroid disease.

  • Thank you I will update you tomorrow. I hope she will listen, she was very helpful last time I saw her.

  • So I went to the doctors this afternoon and have been signed off for another 2 weeks, not thyroid related.

    I asked her about having more tests as you advised and she said that these had been done and she pulled them up on her screen. She said that she had wanted to suggest upping my dose again but because of my body's reaction to the 50mcg she said that we should wait until I have my next blood test in 3 to 6 months time.

    I will wait for 3 months and then book in for a blood test.

    I asked if I could take vitamin supplements but said that from my tests last year all my vitamin levels were very good and only vitamin D was slightly borderline so I have purchased some to take.

    Other than that I guess I will have to see how things go??

  • Sian, did you get a copy of your vitamin and mineral results? If not then ask for them, with reference ranges, and let's see if you are optimal.

    What was your Vit D level and what D3 supplement and strength did you buy?

    Did your GP tell you there are important cofactors needed when taking D3? Probably not because they don't know as they're not taught nutrition.

    You can read about the cofactors needed here

    vitamindcouncil.org/about-v...

    D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.

    D3 and K2 are fat soluble so should be taken with the fattiest meal of the day. D3 needs to be taken four hours away from thyroid meds.

    Magnesium comes in different forms, check here to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds

    naturalnews.com/046401_magn...

    Check the other cofactors too.

    Did you ask about going back on your original brand of Levo?

  • To be honest when I pulled my bit of paper out of my bag she didn't seem to impressed. I will try and get a copy of my vitamin results she said she was happy for me to but vitamin d from the chemist and take them.

  • You need to know what your Vit D level is so that you know what dose of D3 to take.

    Borderline could mean that you are just under the Deficiency level which would mean that you need a loading dose. If you are in the Insufficiency category you wouldn't need a loading dose but you would need a decent amount, maybe around 5000iu daily. You also need to retest after a while so that when you reach the recommended level of 100-150nmol/L you can go onto a maintenance dose to keep it there and then retesting once or twice a year is recommended so that you don't reach toxicity level. Excess D3 gets stored as it's a fat soluble vitamin, unlike the water soluble vitamins where excess is excreted.

  • She didn't say, I will see if I can get a copy of them. She said I was just under and that if I took supplement of vitamin d that would be fine x

  • Hi doc has told me it's non fasting blood test! It's only since I have been on this fab site that I know a lot more. I didn't realise that the thyroid can lead to all these conditions very confusing I thought it must be the menopause 😂 I am finding out so much! 🙈😴

  • You are on insufficient thyroid hormones and it is no wonder you feel so ill and SeasideSusie has given her very informative response.

    We have to read and learn because we know far more than most Endos and doctors by now on this forum.

    It is the only way we can recover good health. It is o.k. for those who do fine on levo but they are certainly not ont his forum.

  • Thanks, it is very refreshing to speak with people who get it. My Husband (bless him) just doesn't understand when I show him information to try and help him understand how I am feeling.

  • you've had great advice ( seasidesusie was very comprehensive ) - you've been undertreated for years - Get your Doc to test your T3 and the core four - Vit D, B12, Folate and Ferritin as HAVE to be working ... there is hope I promise - take the advice from the lovely gurus on here !

  • I would advise you to ask your doctor to put you on a lower dosage despite your blood tests showing your thyroid levels are normal. I too was having the same exact issues as you. So similar that I'm shocked you have the same exact symptoms that I was having. My blood tests were showing the thyroid levels within normal range but so knew that was not so. SO, I googled and came across information that lead me to believe my dosage must be altered. Without the knowledge of my doctor I split my pill into half and most of the symptoms disappeared. The palpitations, dry skin, anxiousness, extreme pms symptoms, as well as tons of mucous build up. Now that I've discovered I need a lower dosage, I will be seeing my doctor to get a prescription for it.

    I'd love to hear from you if this works for you.

  • I've had many of your symptoms. I'm very surprised you've been on such a tiny starting dose for so long but I'm sure more experienced members will respond. I just wanted to say I had blurred vision, didn't know it was a symptom and was not yet aware of the forum a few years ago. I had an eye test and bought new glasses, pointless, they got better with my increase in levo!

  • The following link may be helpful. If we have clinical symptoms they should all resolve when we are on an optimum dose of replacement thyroid hormones that suit us.

    thyroiduk.org.uk/tuk/about_...

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