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I am diagnosed with adhd and aspergers but apart from that have always been healthy, fit and very energetic! That was until last year, September 2016 to be exact! I started taking medication for adhd - methylphenidate (xenidate) and had several side effects which after doubling my dose after one week (as directed by gp and psychiatrist) got a lot worse, some of which included chest pain and breathlessness. I stopped taking it and went to docs and they carried out ecg, blood test, BP, hr (all of which should have been done before starting adhd meDs, but wasn't!) my bloods came back abnormal: tsh >99 t4 6 (range tsh0.5-5.5 t4 12-22) they told me I had underactive thyroid and said because my antibody was over 1500, I would have it for the rest of my life, sent me away with levo 25 and that was that! To say I was furious was an understatement! But I was too ill to argue at this point. Me and my 3 yo had to move in with my sister because I was just a blob, couldn't get up my stairs, lift my arms even. I took the levo 25mg for 4 weeks and in that time my levels had more than halved. I had to stop at this point because I was due a thyroid scan in another 4 weeks and so endo said I had to. I did this reluctantly as was scared levels would rise again. Low and behold my levels continued to decrease without levo and when I had the scan they found my thyroid was completely healthy and working (as I had iodine uptake). I decided to continue off med and by this point had read so much and cut out coffee and started supplements via d, c, fish oil (gp refused to test vit levels and cortisol). Anyway my levels finally got back to within normal range in Feb this year, however I had felt back to normal and started exercising long before this (Nov). In April my tsh had risen to 8 and at the end of April I started to feel some symptoms back. Then May 9th tsh >99 t4 4.6 now feel like I'm struggling again. Asked my endo for an appointment and he refused and told me to wait till after my next blood test in June! Again I am left feeling frustrated and helpless because I don't seem to be getting any answers, they just want to give me a pill and send me on my way. I am on my own with a 3 year old and I work pArt tIme so can't afford to be ill. I am currently back on 25mg levo which I've been taking for almost a week. Can anyone advise please?

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  • Posted

    Hi Lucy,

    the high antibodies reading probably means you have a common thyroid condition called Hashimoto's where the immune system attacks the thyroid. This is not something that will go away but taking the Levo is a good solution for many people, starting at a low dose and raising it  gradually. This takes months and there was no reason to be angry because that is exactly what most responsible doctors would have done. Maybe they should have explained better.

    Another thing to know is that changes in medication can take weeks or months to show in tests and this may account for the apparent recovery of your thyroid. 

    Telling you to stop the meds prior to a thyroid scan seems strange but I am not a doctor.

    You write TSH>99. What does that mean? What was the actual value? People usually quote the actual number.

    You should certainly keep taking the Levo. There is not much point in going to see your Endo now, if you have only been back on the Levo for a week. Waiting til The June blood tests does make sense.

    keep us posted and good luck!

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    • Posted

      Hi Dave64969

      The normal range at my Doctor's Surgery for TSH is 0.5 - 5.5. My TSH level is more than 99.0 so been very unwell. It rose from 8.2 in April to more than 99 in May. Went to the doctors yesterday as I had even more symptoms such as; pins and needles, dizziness, confusion, palpitations, chest pain, numbness in the back of my thighs and he was baffled with my levels and how quickly the levels increase. I don't suffer with Hypo symptoms until it gets extrememly high. And even then, he told me I don't look typically hypo (I can only assume he means weight gain, dry skin, hair loss, puffiness, as I don't have these - more neuroligical symptoms). Anyway he said I should be seeing the endo right away and has written to him, marked as urgent. Nicest and most patient doc I have ever seen about anything!! Staying positive. 

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    • Posted

      Lucy, were you given a diagnosis of Graves' disease? From what I e read on these posts, Graves can have very high TSH.  Hashimoto's usually doesn't go so high.

      Either way, they're both autoimmune disease. So treat accordingly. Autoimmune disease is caused by exposure to foreign bodies such as chemicals. So, treating an already irritated immune system with a chemical is  contraindicated to immune health. And in fact, levothyroxin can cause or worsen existing autoimmune disease. Heavy metals such as mercury and bromine can interfere with thyroid function, resulting I hypothyroid symptoms.

      The thing you may be experiencing is that with thyroid disease, you often get    Both overactive and underactive thyroid activity prior to the thyroid gland pooping out and failing badly. This is why some hypothyroid patients actually lose weight prior to going horribly hypothyroid. The belief is that treating the thyroid with medication gives the thyroid gland a break so that it can recover. The belief is also that thyroid disease and meds are for life. Once you have thyroid disease, you'll likely always have it. However, meds are not always the solution for life. None of the meds are bioidentical, so really cause problems, especially in higher doses.

      For you, because you're young and healthy, you have a lot better chance of turning the disease around. Do please look at diet and supplements to support your syst while you're doing whatever else you need to do with meds.

      A quick online search for crazy high TSH levels shows that other people are experiencing similar huge spike in TSH along with antibody spikes, so your condition is not uncommon, just for some reason, not standing out to docs. I'd try and figure out the cause of these spikes, whether environmental or pituitary problem. 

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    • Posted

      Hi MtViewCatherine

      Thanks for your reply. I have taken on board what you have posted and it has already made me feel bit better. I definitely agree with you that something is triggering this as it's not a constant thing. I just need to find out what. I have decided to cut out bread and only eat gluten free pasta etc. I have never had any effects of gluten I.e bloating etc but I'm willing to try a gluten free diet if it means I can get better. I am going to have a blood test for vit d b12 folate and ferritin and am already supplementing with d3, c and fish oils so hopefully that will show if I have any vitamin deficiencies. I haven't ever been diagnosed with Graves but hopefully will see endo soon so could perhaps discuss possible triggers.

      Thank you again

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  • Posted

    Hi LucyLu, to be the voice of reason, realize that you probably have severe brainfog, making it difficult to sort things out. This is typical with hypothyroid, so keep it in mind. Your situation is typical, as I've rub kit my kife repeatedly, only to crash with the onset of each thyroid attack.

    Your antibodies tested very high. This tells you that your body's immune system is overstimulated, for whatever reason. The immune connection to hypothyroid disease is also typical, and is generally found in thyroid disease.  There are two things you need to do for this. 1) reduce the lad on your immune system by cutting out foods that trigger it such as wheat, dairy, preservatives, soy, corn, processed and prepared foods. Eliminate all gluten products.

    2) boost your immune system by making sure you're getting enough nutrients including vitamins, minerals and animal protein. 

    Start with good good quality vitamin and mineral supplements with glutenfree paleo style diet to boost and calm your system. It's extremely important to get enough protein, as your body needs protein to heal.

    Hooe you're feeling better soon.

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