high TSH

I followed advice from people here and I raised (gradually) the amount of Euthyrox, from 25 to 50, and my heart goes like crazy, I can hear it in my ears. I cannot walk three to 5 steps and I have to stop because of shortness of breath. I've prepared my hormone for morning, 37.5 again and then I'm going back to 25. What if my TSH stays high? I take Selenium - L-selenomethionine 200mcg daily! plus B3, Zinc, D3, all B vitamins, C (2 g daily), magnesium chloride, etc. What is wrong with me?

my numbers:

Ft4: 1.02 (0.89-1.76)

Ft3: 3.73 (1.8-4.2)

TSH: 23 (it was 17, not long ago!)

anti tpo: > 1000 (<35 UI/ml)

anti thyreoglobulin: >3000 (<40 UI/ml

in a few days I'll repeat blood my tests

28 Replies

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  • Evening hun - rather than listening to people on here you should go and see your GP as that's what they train all those years for - or a pharmacist - people on here yes they have gone through what you are going through but you are a person in your own right that will have different reactions to those who have advised you - not everybody's make up is the same - that would be like me saying to my hubby oh use my asthma inhalers if he has a bad cough - before you go any further with the meds you are taking GO and SEE the DOCTOR what's good for one person isn't good for another.

    Hope you take my advice before anything serious happens to you. Good luck 😘😘🤗🤗

  • I've been to numerous doctors, they don't know or don't care!

  • So you are saying you are medically trained then?

    This person has taken advice from others on here who aren't medically trained and now they are having the problems that could be serious people should never ever say you should try this it worked for me especially when drugs are involved as I said in my response to them what works for one person will not necessarily work for another.

    If you have had problems with doctors then suggest you change your surgery.

  • Sometimes a person's personal experience far outweighs doctor when it comes to prescribing hormones.

    Most of us on this forum have had to 'search for' and try to 'find' someone who is competent in treating people who are very unwell with severe symptoms. Unfortunately, these doctors are like finding a speck of gold dust in a pile of coal dust.

    We'd love to consult a knowledgeable, wise, kind, sympathetic doctor who can bring us to good health but unfortunately these are few and far between.

    What about some of our members unwell and taking levothyroxine for up to 30 years when they should be out and about enjoying life instead of not even have the energy to make a cup of tea, losing their jobs etc etc.

    We do state that there's no medical qualifications but when one recovers their health through the support of this forum and, they no longer need to throw their money away (which many don't have in the first place) they are happy to be back in the land of the living.

    If they are having heart symptoms they should get checked in the cardiac department which I did and discharged as 'probably viral with a high cholesterol' Yet another wrong diagnosis when my TSH was 100 but not one doctor had checked it nor specialists.

  • Thank you! You are 100% correct! I've been to the cardiac department, too, there was no organic, neither functional problem. All is connected to the thyroid, which the endos don't really know how to handle! Do they really want to?! I wonder!

  • The cardiac dept was good and I had overnight monitors etc. They were stumped. As soon as I stopped levo, so did the palps. Although on NDT they were occasional rather than constant. On T3 I've had none.

    Also one of our doctors a virologist not an endocrinologist, now deceased, who treated patients as he was taught and tried to interact with the Endos and BTA about the perilous state of some patients in the reliance on the TSH for diagnosing. He also prescribed other than levothyroxine.

    He then seemed to be a target and brought before the GMC several times and always found he did nothing wrong. At his last appearance more than 2,000 testimonial letters were sent by grateful patients. I wonder how many other doctors (not in the Endocrinology) who would get so many testimonials nowadays. People travelled the breadth of Britain to have an appointment.

  • Than you! but how can I replace levo? is there anything else to take? and what happens if I don't take any?

  • There are options but these have to be paid for by you. It might be well worth it. This option if your GP is agreeable (although it might be difficult now that the BTA seem to have directed that doctors have no longer to prescribe T3) is that you add some T3 to T4. That is despite quite a few Researchers and studies which reflect that patients feel best when on a T4/T3 combination. BTA also says on the statement to doctors that it could be prescribed 'on a clinical need'. Whether or not they judge the fact that a patient feels much better is a questionable.

    The very original thyroid hormone replacement is called Natural Dessicated Thyroid hormones, it is dessicated which isn't really natural as it is processed, but it is as near as 'natural' as possible as it is from pigs/cows thyroid gland.

    There is only one NDT which doesn't need a prescription and it is called Thyro Gold. I don't know what it costs but some have found it helpful. NDT contains, T4, T3, T2, T1 and calictonin which our healthy gland would produce. (latter 4 in very small quantities. All others need a prescription but I believe some members purchase abroad without. You'd have to put up another post asking for a Private Message to be sent to you of details of how to purchase.

    Personally, I would try T3 added to your T4 for a few months to see if you feel better before you try other hormones.

    If we don't take thyroid hormone replacements, we very gradually become very ill, our heart will be affected as there's insufficient hormones plus everything else with all of the symptoms reappearing or appearing for the first time. The worst is a myxedema coma.

    It is a big learning curve but worth it in the end if you feel your good health is back. Bear in mind I am in no way medically qualified but had to find my way through a maze of trials of this and that. :)

  • Thank you! I understand, that's what I'm doing, too: trying to find out what doctors won't tell from reasons unknown to us. I've read a lot about Hashimoto's and it says somewhere that NDT doesn't work for those who have a TSH over 10. I don't know. In a few days I'll have new blood tests and I'll be back.

  • Excuse me, how can I ask to have a private message sent to me? Sorry I don't know!

  • You just post on the forum as usual and ask for a private message to be sent to you and the member will respond by pressing your name (you can press on mine for an example) and on the far right-hand side you will see message. Click on it and it will take you to a new page for you to type message.

  • Thank you!

  • I found this on the net:

    health.harvard.edu/blog/for...

    I think it's interesting, don't you? but I don't think I fall into this "group", according to my Ft3 and Ft4, what do you think?

  • I cannot comment upon it as I'm not medically qualified but I do find it hard to believe people are being prescribed levothyrolxine for hypothyroidism when they don't need it. In fact most people who present with hypo symptoms are mainly dismissed due to their TSH level (in UK not reaching 10). However due to your high TSH and normal T3 and T4 you should ask for further inevestigations.

  • Hi, there!

    I have new blood test results:

    TSH: 14,88 (0.38 - 4,31)

    Ft4: 0.78 (0.82 - 1.63)

    Ft3: 2.48 (2.10 - 3.8)

    It seems that in comparison to my last blood tests, all three have decreased, which for the TSH is good. Between the two sets of tests I was taking 25 mg thyroid hormone (no T3) and because my TSH was high, I started to increase, gradually, the thyroid hormone. I feel now worse, after the increase, so I started going back on the thyroid hormone, I am on 25 again. Feeling worse in the sense that I was short of breath, worse than before. Otherwise, no daytime tiredness, but still gaining weight. My breath was never so bad as when on 50 mg of thyroid hormone, I'm desperate. Now I ordered naltrexone, which they say is good for Hashi's. I'll see what happens. What do you think? Please?

  • 25mcg is too low a dose once we're diagnosed unless we have a heart disease.

    Normal starting dose is 50mcg with increases of 25mcg every six weeks till we feel well.

    What we shouldn't do is chop/change every few days because you wont reach a dose which is, for you, optimum.

    Both FT4 and FT3 are far too low. We need a higher FT4 to convert to T3 and we need a higher FT3 as well.

    Don't chop/change until you've given levothyroxine a chance at least a few months. There's no quick-fix. What you can do as well is copy and paste your newer results onto a new post for more comments.

    Thyroid hormones are necessary for us to live. They provide the energy for everything in our body to function but when it's struggling for thyroid hormones it has to be done gradually and you have to have patience. It has probably taken years for our thyroid hormones to gradually diminish and that's why we don't notice it at first, then the symptoms come along and doctors know none and sometimes don't do a blood test to see if we are deficient. TSH isn't good enough for diagnosing without the T3 and T4.

  • I forgot to mention that it takes about four to six weeks for levothyroxine to build up in your system.

  • I found this:

    read he comment about Hashis's, please!~

  • Ok, I understand, but how do you explain that T3 and T4 have dropped after increasing, gradually (during over 2 months), the amount of levo? because I can't!

  • Two months isn't very long to reach an optimum. It takes about 6 weeks from the start of your regime for the hormones to gradually build up in your body and cells and that dose is only a primary one. It can take six months or more to reach optimum, not one or two. It has probably taken us years for hormones to gradually drop until we are diagnosed hypo.

    Also your dose has to be increased at the same time till you feel well. Blood tests don't tell us everything and it is how the patient 'feels' on a particular dose which is the best way to judge.

    I don't bother with tests at all now because I feel well. I have a yearly one which covers everything.

  • I found some Novothyral tablets (100 T4 and 20 T3). Now taking into account my last blood tests, do you think I should take a 4th of such a tablet, to begin with? thanks a lot!

  • Surely its about using information given here to help yourself. I have found all answers very measured in response to enquirers from those asking for help.

    Not yet sure why anyone would read this forum only to put down the advice given.

  • I have found here answers that are very sensible, moreover, exactly what the last doctor I went to, said. I simply cannot take more hormone and I was curious if somebody had met with the same situation.

  • That's really odd. Your FT3 level is quite healthy - towards the top of the range, which is why taking more Levothyroxine gives you hyper symptoms. However your antibodies are really high, both types (which is unusual). Also your TSH is much too high. Most people with normal thyroids have a TSH between 0.5 and 1.5. Your FT4 is quite low - it seems that all the T4 you are taking is being converted into T3, which is not necessarily a bad thing. I think you need to be referred to an endocrinologist who specialises in thyroid issues (most endos specialise in diabetes). In the meantime if you feel better on 25mcg then in your place I would take that - with FT3 levels like yours you are hardly going to fall into a hypothyroid coma! If you start to feel cold and sluggish you can always increase your dose.

    All the best, and I hope you get some good advice soon. If you are in the UK I believe Louise Warvill, the admin of this website, has a list of good endos in different areas. It might be worth asking for a referral to one of those. You might even be able to see one privately if you need to, I don't know.

  • Thank you! your answer is great and helps me a lot! like others on this forum! I will do everything in connection with how I feel like! Thanks again!

  • Ft4: 1.02 (0.89-1.76)

    Ft3: 3.73 (1.8-4.2)-----------------

    Your Free T4 is 15% of the way through the reference range.

    Your Free T3 is 80% of the way through the reference range.

    Since the Free T3 is the hormone responsible for most of the symptoms of hypothyroidism, the fact that yours is 80% of the way through the range suggests you probably wouldn't do well if you took more at the moment. But that could change.

    ------------------------

    I can think of a couple of things that could be causing your problems.

    1) This is a long shot. Before you have your next blood tests please stop taking any supplements you take that contain biotin for 3 - 4 days before the test. It is often included in B supplements, but just check whether or not you are taking it.

    The reason for suggesting this is explained in the following post - please read the links that were posted in the first post too :

    healthunlocked.com/thyroidu...

    Can I stress that you can re-start your supplements containing biotin after the tests have been completed. There is nothing wrong with taking biotin. It just screws up some (but not all) thyroid function tests - but it depends on the machines used in doing the testing and it may make no difference.

    2) anti tpo: > 1000 (<35 UI/ml)

    anti thyreoglobulin: >3000 (<40 UI/ml)

    Your thyroid antibodies are sky high. I don't know if you are aware of what thyroid antibodies do, but they could be making you feel terrible and giving you unexpected thyroid test results as well.

    Thyroid antibodies fluctuate a lot. You can go through "flares" where the numbers of antibodies increases, and/or the antibodies may become particularly active. They attack the cells of the thyroid, damaging those cells, and eventually killing them off. When a thyroid cell is killed by antibodies it releases any thyroid hormone it contains into the body. So, you could be very under-medicated giving you a very high TSH, then go through a massive flare up of antibody activity, and the Free T4 and Free T3 in your blood will suddenly increase. When Free T4 and Free T3 increase your TSH should drop, but the response isn't immediate, it takes a little time (don't ask me how much time because I don't know).

    The end result of this is that, with antibodies fluctuating and flaring up and then calming down, possibly quite rapidly, your TSH is constantly trying to play catch-up and never quite manages to be at the right level for your levels of Free T4 and Free T3.

    There is no cure for thyroid antibodies but many people have successfully reduced the numbers they have and reduced the flares they have with various dietary changes. It can take a lot of trial and error to find out what will work for you. Going gluten-free helps many people. It has to be done 100% though - it isn't possible to be almost gluten-free. Some people get no benefit from that and try going lactose/casein free by giving up animal milk and associated products - e.g. yoghurt, cheese, ice cream etc. Give each dietary change 2 - 3 months before deciding whether or not it is helping. If it doesn't help then start eating the food again. Cutting out too many things will restrict your diet too much and it should only be continued if you get a good results from doing so.

    For more help on the subject of Hashimoto's Thyroiditis (which is what you have thanks to those antibodies), please search for info on Izabella Wentz. She has a website, a facebook page, and she has written a book which gets good reviews on Amazon. She is a sufferer of Hashi's herself and has succeeded in putting hers into remission.

    I hope this helps. Good luck. :)

  • Have you had your selenium levels tested? Selenium toxicity can cause a lot of problems and many symptoms are similar to thyroid issues! Like hair loss and heart palpitations. I did 2 months of selenium to see if I could lower my antibodies, 200mcg per day, after one bottle of selenium (60 capsules) my selenium level went from halfway in the range to nearly double the range. I was in a very toxic level just from 200mcg a day for 2 months and I had a LOT of problems during this time. Both Endo and Naturopath advised me to stop selenium and a lot improved.

    If you haven't checked your selenium levels better get that done.

    Good luck!

    Dan

    (PS by the end of the selenium experiment not only was I way over range but my antibodies doubled from 500 to 950)

  • Thank you, that's a good idea! first thing, I'll have my selenium checked, also my iodine! that might be a problem, as I take selenium for over a year now! Thanks again! Aurelia

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