Why is why TSH going up?

I've been taking levothyroxine, starting at 25mg to a Max of 125mg. Was reduced to 100mg by my endo who told me to ignore the numbers as my symptoms made clearly hyper. Yet despite the changes in meds each time I have a blood test (3 monthly as per prescription reviews) my tsh gets higher, not dramatically. It started as 5.2 18 months ago aboutish and is now 7.8. Any idea why it's not coming down? I also BTW have PA (endo also tried to stop my 3 monthly injections but now resolved), various vit deficiencies and some other ongoing stomach issue. I feel like a hypochondriac right now and my gp is questioning if I'm actually taking the medication which I am...losing the will honestly....

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  • I believe the worst thing doctors can do is adjust our hormones according to a blood test! I believe our clinical symptoms are the priority (I am not medically qualified).

    Your TSH is rising as you don't have sufficient thyroid hormones in your system. T4 (levothyroxine) has to convert to T3 which is the active hormone required in our cells (T4 is inactive).

    You need more levothyroxine until your symptoms recede or the addition of some T3 (liothyronine).

    thyroiduk.org.uk/tuk/thyroi...

    To feel reasonably well, we need a TSH to be around 1 or lower and some need it suppressed to feel well.

  • Thank you Shaw's, so I guess another fight against my gp after just having my b12 injections renewed.....she won't be happy! I think the problem they're seeing is I've lost a lot of weight and am shaking, so more hyper than hypo symptoms so I kind of get it. But I'm under the hospital gastro for that now...endless waiting times....

  • Sometimes our stomach can be affected by with dysfunctions of the thyroid gland. We get low acid although symptoms can be very similar to high acid and get prescribed antacids instead of adding acid. Many of our members take Betaine or betaine with pepsin for stomach. Some also take a good Apple Cider vinegar in juice or water during meals.

    chriskresser.com/the-thyroi...

  • Apple Cider Vinegar is excellent for restoring a balance in the gut but you do need the cloudy organic brand for best results.

    It's a bit more expensive from a good health food shop but the supermarket brands are next to useless.

    You've probably read this on here before.

    Good luck with all your investigations .....in going through the same !

    Susan

  • Weight loss and shaking can be caused by adrenal problems - when you don't have enough cortisol your body produces adrenaline instead.

  • This will be informative, first two in particular:

    web.archive.org/web/2010103...

  • Exactly. Mine is suppressed but this is being queried now for next appointment and I know I will have a job fighting for the dose I'm on now to remain, when I feel reasonably well, and end up symptomatic when dose is reduced. It has been detailed in my notes that I am aware of possible heart and bone damage if I remain on higher dose than my blood test recommends. Well how about not functioning day to day by reducing my dose and letting me stagnate. The depression and anxiety this all causes can be too much at times.

  • Unfortunately, they spout info which isn't true. In fact, low dose of hormones can cause heart problems as well as other serious diseases.

    An extract:-

    Many endocrinologists talk of using the TSH and thyroid hormone levels to "fine tune" hypothyroid patients’ thyroid hormone dosages. Considering how much the hormone levels vary, however, it’s obvious that the concept of fine tuning is mistaken. For the sake of their patients’ health, endocrinologists should promptly abandon the notion. This is unlikely, though, due to financial inducements the endocrinology specialty receives from corporations that profit from doctors endlessly ordering the hormone levels to "fine tune" their patients dosages. Hopefully, though, you can use the scientific evidence to persuade your doctor to use a safer and more effective approach with you. More on this topic

    web.archive.org/web/2010103...

    Also on the same link read November 28, 2003.

  • Thank you shaws. Don't you think everybody should be tested when well to know what their optimum "number" should be so that if in the future people succumb to under/overactivity then blood tests can be used successfully to medicate to aim for that magical number. This was detailed in a book called Why Am I Always Tired? and I showed the relevant page to a GP who was a 6 month locum at the time and he took it on board and was really interested. He said he would investigate further and took a note of the title of the book. He was the GP who told me I had been suffering undiagnosed for 7 years and he detailed my treatment forecast, I was gutted when he left.

  • Correction:

    Why Am I So Tired?: Is your thyroid making you ill?

    by Martin Budd N.D. D.O. (Author)

  • They need to be sure that your shaking and Weight loss have anything to do with your thyroid. I love it an endo who reduces meds in response to symptoms, I bet he wouldn't up them in response to them even if your symptoms showed hypo and your bloods normal!

    I would think you'd need to be very overmedicated to get visible shaky. I'm not convinced about your case.

    Though there are all Sorts of reasons why our bloods might not show that we are hypo when in fact we are - t4 might not be converting, might be too much rt3, cells might not be absorbing - I've not heard of a case Where the TSh is high and it's not an indicator of a problem. Have you monitored your temperature and pulse, because if they are high and fast than your endo might well be right but if they are low and slow then I can not see how you can be overmedicated.

    To check if you have low stomach acids my nutritionist got me to do the bicarbonate test. You drink a teaspoon of bicarbonate soda dissolved in half a glass of water, this should make you very burpy. If in the ten minutes after drinking it you don't burp or only burp once or twice then it indicates not enough stomach acid.

  • Ps what was your t4 doing? Did endo check your t3? Under the circumstances they really ought to get a full thyroid panel done to see the bigger picture.

  • An endo who thinks a TSH of 7.8 is 'hyper', is a very dangerous man! Either you ask for a second opinion, or you start to take charge of your own health - the doctors you have at the moment are not only going to keep you sick, they are going to make you sicker!

    Read all you can, and learn about your disease. And get your own private labs done. My guess is that you do not convert levo (T4, storage hormone) to T3 (active hormone) very well, and that's why your TSH keeps rising. Reducing your levo is just going to make things worse. Losing weight and shaking hands do not make you 'hyper', or over-medicated. There could be all sorts of reasons for that. But, seems like they aren't going to investigate anything else, because it suits them to lower your levo. It really is time to take charge of your own health, I'm afraid. :(

  • Also, you said you had "various vitamin defincincies". You need to get B12, Vit D, Folate & Ferritin up to optimal levels, (not just in range) for your body to be able to absorb anything you take for your thyroid. I was under medicated, but once I got the above sorted, (thanks to advise on here) I actually had to reduce my T4/T3 rather than increase, because it was finally able to do its job. If your doc won't test for these/some of these, get tests done privately through "Blue Horizon".

  • Go by how you FEEL not numbers. If you are not getting hyper symptoms then tell your doctor.

  • From experience you are probably not converting the T4 to T3. You may need to take T3 directly or a combination. Try a good iodine supplement as well. J

  • Don't take iodine unless you know you are deficient, especially not if you have thyroid antibodies as it can make your condition worse.

  • can i just jump in here with the mention of Iodine and add what I have just learned from Dr Mercola which might help others. Iodine deficiency can cause dry mouth. I have had that for ages and it disturbs my sleep so I am tired during the day, also 2 weeks ago had a blocked saliver gland which could be linked. I knew there must be some reason whey my I wake up 3 times every night for a swig of water. Just learnt of new lab, not sure if I can mention it here so will PM you. Prices very reasonable and some offers this months.

  • And make sure to get selenium as well, as iodine and selenium work together. Taking one without the other can be harmful.

  • Iodine supplements are only a good idea if someone has an iodine deficiency. And in the western world iodine deficiency is rare.

  • We already know we need it, and we know we can't live without it, but excess iodine is not a good thing. It's not going to help her thyroid problem.

    If she is taking 100 mcg levo, she is already getting 60 mcg iodine from that. Plus what she gets from her food. Plus her thyroid isn't making much hormone, if any, so isn't using as much iodine as it normally would. She does not need excess iodine. It could make her a lot worse off than she already is.

    You can do what you like, but you shouldn't suggest others do the same. Not when it's something controversial like iodine. You could be responsible for the degradation of her health.

  • Iodine deficiency is endemic. It is needed for many different functions within the body. For more information read David Brownstein's Iodine why you need it and why you can't live without it. Always best to find out for yourself.

    I have been using it for years. Always use a good quality food based supplement.

  • I go along with grey goose. Her advice here is spot on. You need to be looked at by someone with a fresh pair of eyes who'll take account of everything. Getting some thorough labs done in the meantime would help. Other specialists e.g a cardiologist would want to know why you hadn't been urgently referred back for general investigation, because the high TSH combined with 'hyper' symptoms doesn't add up.

  • What is "PA"? If you have multiple vitamin deficiencies and weak adrenals, you won't be able to use the thyroid you are taking properly. The major symptom I got while my adrenals were messed up, was hyper symptoms. Keep in mind that when your system is messed up, you probably are not converting T4->T3 efficiently. T3 is necessary for good adrenal function (see STTM), so you might benefit by backing off on T4 and adding in T3.

  • Absolutely, hence the need for some thorough lab tests.. as it probably started with the gut then became an endocrine problem especially wrt. T4-T3 conversion, but there are other specialists who may be a bit more thorough who'll understand how dodgy adrenals then affect the heart etc. The problem with over specialisation in the health service is that they sometimes entrench themselves rather than have have multi-disciplinary discussions on the best way forward.

  • Pernicious Anemia. :)

  • Hi,

    Switch to NDT and go gluten free, I bet you'll then start to feel better.

    Have you had your thyroid antibodies tested? Very important as you may have Hashimotos like a lot of people just told their thyroid gland isn't working properly and left on Levo for years until they are very unwell!

  • Hi all

    Wow, thank you for all the responses. I've just also realised my title for this thread makes no sense...haha, brain fog got to love it :P

    To try and clarify a few bits yes I have hasimotos, endo did confirm that. I had one 30 minute appointment before he discharged me back to my gp sending her a letter to reduce the levo and stop the b12 injections (after 6 months I managed to get them reinstated). My gp says that as the endo is a specialist and said I was hyper on 125mg she will not increase past 100mg unless she refers me back and he oks it. Which will take months

    I do however have a positive which I didn't explain, after asking for 8 months I finally got a referral to the gastroenteritis department as I kept saying my so called hyper symptoms were due to the fact I can eat almost nothing. The gastroenteritis consultant was the complete opposite to the endo and ordered full blood work on all, a chest, abdomen and pelvic CT and an endoscopy taking biopsies of my stomach and upper intestine

    I'm reluctant to take anything else such as iodine, I don't understand enough and conflicting advice on here. I also don't want to accidentally mask a problem by self medicating while awaiting a diagnosis

    My previous vitamin deficiency issues alongside the PA were Folate, Ferrate and vit D. I've taken treatment for all 3 and have been fine on blood tests for over 6 months with no improvement to my TSH.

    I'm just collecting conditions and I swear if anyone else advises me to exercise as it'll somehow make it all better I'll scream. I've dropped from 10 stone to 8 since January and have the energy levels of a sloth.

    But the tests are ordered so I do have hope, will post the results when I get them

    Thank you to all who commented, means so much to know people care and understand (online if not always in real life) :)

  • Well, I'll say the opposite! lol DON'T exercise! When your FT3 is low - as it is bound to be - exercising is counter-productive, because it uses up your T3 and makes you more hypo. Does that make you feel better? :)

  • Thanks goose, that does make me feel better :)

  • Id say to look into two areas you need your FT4-FT3 checking to see where they are, plus I'd get your adrenals assessed. An indicator of adrenals us other hormonal issues too, like aldosterone, testosterone, DHEA...

  • Get a referral to a good endo immediately! GP's are minimally trained, ie. jack of all trades but masters of none!

  • I have hypothyroid and stomach issues, I can't answer why your numbers aren't coming down but you won't absorb vitamins until you are right with your thyroid levels it's a vicious circle I'm afraid, I have to take supplements everyday and have been on prescribed iron twice in two years because working 6 months my levels are below the normal limit, the first time my level was 8 as opposed the 300 it should have been, that was scary as I was nearly laid flat out tired all the time.

    The truth is if something is out of balance with your thyroid, everything goes haywire. Id recommend you see a nutritionist as they will take your blood test results from the doctors and put you on supplements and a diet that will help you regulate and maintain your thyroid function. It's working slowly but surely for me xxx

    Good luck xxx

  • Well, I suppose I have one less thing to worry on as of today. I no longer have a reason to be back at work soon, my employer has given me notice to terminate my employment as I don't have a diagnosis and therefore I can't give a return to work date. I'd asked for a few more weeks to get the results from the CT and endoscopy/biopsies, but nope. At the end of the letter was a thank you for your 17 years of service note....touching....

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