Can anyone relate to my symptoms and tell me what I going through ?

I am a 37 years old male and I was told by the GP around April 2013, I was Hypo and was put on LevoThyroxine 100 mg. There was never a requirement for a retest or something as I was told it was a lifelong medication. Since I knew I was genetically predisposed from my mum's side, I started taking it. Around Jan end - Feb begin, Last month there was a gap of around 10-15 days in my Levo as the stock ran out and I was a bit lethargic. When I restarted around Feb 15th, I started getting weird symptoms. Burning sensations all over the body, Dull pains at various points in head, pain in Joints ( arms and legs ) and shoulders, Stiff back around the center of the spine. Many times, I felt as if something very hot was moving through my body and I had "ant biting" sensation at various random points deep inside. It took me around 15 days to realize that Levo gap / resumption was a factor.

When I met my GP, I was sent through for comprehensive blood tests and all came normal as of Mar 4th. The TSH and T4 levels, as of Mar 4th, came back at 4.31 and 20.7

The Vit D level came back at 9. The GP said Vit D, albeit low, can't explain my symptoms.

On Mar 1st I stopped Levo and on Mar6th, I told GP, I am stopping Levo for some time and he agreed. The symptoms started subsiding and I went for a repeat of thyroid tests on Mar 24th and T3 T4 TSH came back at 5.3, 13.6 and 7.45. However I was losing weight and I lost almost 8 KGs in 1 month. Meanwhile, I also saw an GastroEnterologist. He ran additional tests including EBV and he told I had "at some point" have suffered Glandular fever.

At the moment, the weight loss seems to have stopped but I still have vague pains and burning sensations. I continue to feel light discomfort at distinct points in the head. So far, No definitive diagnosis as to where I stand. The Gastro consultant referred me to

a Neurologist as he thinks it is unrelated to Thyroid. I am too scared to get back on Levo for the fear, it may trigger the same "HYPER" symptoms again. I do feel some peculiar burning sensation on the right throat. I am pushing for an appointment with an Endocrinologist, but it will take time to come due to various reasons.

I am very anxious. Any advise ? Should I restart with a reduced dosage of Levo while waiting to see an Endo ? What should I watch out for ?

-Sat

20 Replies

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  • It is very unusual, when first diagnosed as hypo, not to have blood tests approx 6 weeks late and meds normally increased. I assume you were given 100mcg immediately? We have a yearly blood test at least once stable or when clinical symptoms come back.

    When you give your blood test results, if you could give the ranges, as labs throughout the country differ. I will say that your TSH is high at present. Dr Toft of the BTA says '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.' He goes on to say some need a suppressed (which is slightly lower) TSH'.

    Did your doctor test for antibodies as you may have a condition called Hashimotos which swings between hyper and hypo.

    Signs and symptoms of hypo:-

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

    and hyper:-

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

    Low Vitamin D - (vitamin D is a hormone)- excerpt from link below:-

    You may find it surprising that vitamin D is so important for your health, especially if you’re still under the impression that it’s mostly a nutrient for your bones. Most people also think that vitamin D is really a vitamin, but in reality, the active form of vitamin D is one of the most potent hormones in your body, and regulates more genes and bodily functions than any other hormone yet discovered. Vitamin D is produced as a pro-hormone in your skin after sunlight exposure, and is then converted to the potent hormone form.

    articles.mercola.com/sites/...

    I would start levo again but at 50mcg as you have clinical symptoms and increase by 25mcg after 6 weeks and have another blood test and so on. Although weight loss is unusual in hypo some people do lose weight. Levo takes around six weeks to build up in your system and if you stop takes about the same time to leave.

    Do not take medication on the morning of your blood test, take it afterwards and have the test as early as possible. You take meds on wakening with one glass of water and don't eat till around 1/2 to 1 hr later.

  • Can you advise what Antibodies tests I should be looking to get done ? Also, Should I be seeing a Neurologist next or an Endocrinologist ?

  • If you are hypo, the first thing is to get to a stable dose of levothyroxine. As the thyroid gland hormones affect everything in your body from head to toe you should first get this right. Some people have severe problems before they are diagnosed with hypo as the GP's don't know the clinical symptoms. Usually a GP is fine for monitoring us but sometimes we need to see an Endo. I don't understand why your doctor didn't monitor you after first being diagnosed.

    Are you in the UK, if so if you want to see an Endocrinologist, sometimes it's not worthwhile unless you have had a recommendation. Email louise.warvill@thyroiduk.org for a list of sympathetic NHS Endos/private doctors - one of whom may be near you.

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

  • March 25th Test was done with the note - Not on Thyroid medication.

    Free T4 13.6 pmol/L Range 12 - 22

    Free T3 5.4 pmol/L Range 3.2 - 6.8

    TSH * 7.45 mlU/L Range 0.3 - 5.0

    When I did see the GP with these results, he advised me to restart with 100mg Levo. I am being cautious and starting with 50mcg. Have got 2 Antibodies(TPO and TSI) tests done on friday and have a GP appointment tomorrow. Don't know why but the GP refused to test for Antithyroglobulin.

    Also, have an Endo appointment for Friday. Not sure what to expect from the Endo appointment ? Potentially more tests ?

  • With a TSH of 7+ you will not feel well and it is a pity most GPs are unaware of that.

    I hope you get a sympathetic Endo who will help you get better. It is not a quick fix and meds have to be upped gradually.

    If you're not happy with the Endo, email louise.warvill@thyroiduk.org who has a list. Some are private.

  • This is an excerpt from a previous post which may interest you. You will also notice how important ranges are as labs differ throughout the country on blood tests in general.

    You will see some of your clinical symptoms on the followin link and this is an excerpt:-

    I was stunned to find out that I was vitamin D deficient. Normal levels are between 75-200, mine was 18! My doc says that this isnt something that has just happened, I have probably been creeping over a year or more. I am now on high levels of prescribed vitamin D and already two weeks in I have more energy, am sleeping better and my blood pressure has gone down.

    healthunlocked.com/thyroidu...

  • Summary:

    April 2013 Levo started.

    Feb 14 begining - a gap of around 10-15 days.

    Around Feb 14th Levo restarted.

    Around Feb 16th/17th, got sort of weird symptoms (as if aggravated HYPER thyroid ). There was not as much pain pain but burning sensations.

    March 1st Levo stopped. March 4th Blood Test showed TSH at 4.31mlU/L The reference range said the target value for someone on medication is between 0.3 and 1. T4 on that test was 20.4. No reference range was given.

    March 25th Test was done with the note - Not on Thyroid medication.

    Free T4 13.6 pmol/L 12-22

    Free T3 5.4 pmol/L 3.2 - 6.8

    TSH * 7.45 mlU/L 0.3 - 5.0

    One of the EBV tests suggested I have suffered Glandular fever sometime ( not known when ? ) in past. I have seen a few doctors but not with a focus on Thyroid.

    My problem is - Although the severity of the symptoms subsided, at the moment, I have arms and legs and shoulder pains, thigh discomforts, burning sensation and tingling at many random points in the body. Random Head pains at different points, Pain and discomfort in the waist and spine discomfort. Lost 8Kg weight in the last 1 month, also slight right throat discomfort. I have been on heavy doses of Vitamin D for the last 25 days or so.The TSH readings suggest I should get back on to Levo, but am worried it may flare up the symptoms again. No chance of seeing a doc for another 2 weeks.

  • Hi, I recently posted about the exact same thing. Pins and needles are usually a symptom of hypothyroidism whereas I, like you, got them when restarting the drug. I experimented a bit and found that increasing the dose has more or less stopped the symptom. So maybe try that?

  • At the time of restarting, I did not get just pins and needles, I got burning sensations all over the body, Stiff back, muscle cramps all over the body started losing weight then stopped Levo and kept losing weight for the next 20 odd days, although the aggravated symptoms subsided considerably, I still have pains and stiff back. I am not sure, if I had suffered a HYPER attack while a known case of Hypo. Hesitantly, I am planning to start Levo 50 mcg a day from here on but your advise makes me think the other way.

  • Hi i posted a symilar post to yours i.ve been on levo since end of december 2 wks to the day pins and needles started all over my body and have never gone . They now feel like electric shock going through my body just like you i could be doing something and in one area i could just get a really painfull shock and my back as been playing up something awful never had trouble before. I had my vitamins tested and low in all i.m now taking vit d calcium folic acid ferratin self precribing b12 even though in low range doc won.t treat it. B12 can cauw3 the paim sensation as well as vit d and many other things . Carry on taking meds don.t stop it does take a while for you to get use to it i.m on 50mg but get tested for the above my antibodies are high only reason why i was put on levo as thyroid was borderline.

  • I had exactly the same... pins & needles, burning, crawling sensations all over my skin, tingling, tremors, muscle aches, stabbing pains....and all over my body, not just hands and feet! I could not sleep at night either as it was carrying on 24/7. I also lost weight. I even changed the brand of the drug in case that made a difference... none at all! I thought the same as you and came to the conclusion that it is just my body adjusting as the drug is absorbed. The introduction of hormone can have many impacts and I guess we just need to be patient and see them through for a month or two. I was also scared to increase the dose but now I'm glad that I did. My doctors were of no help. I still get episodes but it's no longer 24/7 and at least I can sleep through the night!

  • Anxiety is definitely one of the symptoms when thyroid issues are at play. My experience has been that living with a thyroid disorder is a balancing act as effects can take months so it is hard to understand cause and effect. As far as interpreting your results there are others much more informed than me to respond from that perspective so I'll leave that to them.

    This may feel off topic but getting some support for the anxiety is not a bad idea.

    Getting a general understanding of the sympathetic and the parasympathetic nervous system can really help you. I recommend you look at

    as a startung point then do some googling for where you need clarification.

    Personally I can't speak highly enough about Cognitive Behaviour Therapy for anxiety and depression as well as Smart Recovery for any addiction issues (including shopping or habitual thoughts) so you might want to google those (put " at the begining and end of each phrase and google will look for the actual phrase.

    Good luck with it all, it is a journey.

  • How strange to put you on Levo & not monitor your blood levels, the norm is to be seen by an endocrinologist once a problem has been diagnosed.

    I would not have thought all the starting & stopping of the levo is doing you any good.

    You say your vit D is low but have they checked your calcium levels......if not ask for it to be done......if your vit D is low then you may be low in calcium.

    I also get the strange burning sensation & the others you have spoken of.........may I ask what your moods is like........is it changeable.?

    Poor you I do hope you get to see an endo soon you need to be properly diagnosed & the correct meds given.

    Do not expect a miracle cure it will take some time & careful monitoring to try & sort you out, I hope you get some relief soon. Jillymo

  • I got to persist with the same GP and even an appointment is so hard to get, sometimes up to 10 days out. Not sure, if I can go and put up a fight on what protocol was followed. Calcium tests were normal, though. Yes, My mood is very changeable depending on how I am feeling.

  • Hi how strange I was going to post something about a burning sensation today but have just read your post, for some weeks now I have started getting a burning sensation in my spine and it goes to the front a little after plus I have been feeling a warm sensation all over my body, I suffer with anxiety panic attacks etc so I have put it down to this or the change in levo meds I just just don't know what's going on it's very uncomfortable and have started monitoring my bp

  • Patience should be your mentor. It takes time for a dose to stabilise and be retested and it sounds as though a lot is happening at the moment. Getting your Vit D up is a good place to start and it helps a lot with the pain issue and lack of energy. Come back with your next test results and ranges for further comment. Your doctor has treated you badly by starting you on a high starting dose and not doing a follow up. If you are ever given an increase which seems too much for you-rapid pulse, hot flushes or diarrhoea then don't panic just have a few days alternating your old and new dose. Sometimes our bodies take time to get used to it. We are all different and doctors do not seem to realise this! They also use the word 'normal' but you need to find what is normal for you. Welcome to the site, glad you posted and hope you soon start to improve

  • I am going to see my GP today and will push for thyroid peroxidase antibodies (TPOAb), thyroglobulin antibodies (TgAb), and thyroid stimulating hormone receptor antibodies (TRAb) tests.

    Do I need to redo the TSH, T4 and T3 repeated alongside or the readings from Mar 25th are good enough ? Any other tests, I should be doing ? I must mention I do feel my front neck towards the right and around collarbone is a bit sensitive.

  • Ferritin Folate B12 Iron VitD - ALL need to be HIGH in their ranges - for the conversion of T4 into the ACTIVE T3.

    vitamindcouncil.org

    b12deficiency.info/signs-an...

    The B12 site will give you so much information - and far more than your GP !

    How is your gut health ? Demand a scan ! Previous TFT's should be adequate.....

    Good luck :-)

  • Try Aluminium poisoning /allergy

    you are describing symptoms i know all too well

    do you have aluminium or non stick coated pans , electric coffee maker, slow cooker, water supply company changed their processing to use aluminium salts the list goes on

  • If you haven't had your TPO Ab Antibody test run, you probably should. I was recently diagnosed with Hashimoto's Encephalopathy and many of my symptoms are similar to yours.

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