Help with Thyroid Fluctuations

Hoping that someone can shed light on my NDT fluctuations which I think are stress related......

History - After huge row with Dr. two years ago who was adamant I was not hypo because TSH was 1.0, I had private tests done. My t4 and free t4 levels were at bottom of range, t3 slightly higher within range, antibodies all low. Conclusion was that I had secondary hypo with symptoms of slow heartbeat, sometimes stopping, temp range 34 - 35c, thinning dry brittle hair & nails, thinning outer third of eyebrows, lethargy, aching particularly in pelvis, swollen tongue, depression. I am 4th generation on mother's side to have thyroid or pituitary problems. Also had major bereavement two years previously still taking a toll.

Treatment - Reluctant to go back to Dr. I decided to try NDT and imported Thyroid-s. Built up dose with some symptoms disappearing, others lessening but still often lethargic. Also taking adrenal extra, iron, selenium, vit.d3 & k2 combined. At times I have needed up to 2.5 grains to feel better, not well, and know that sometimes I have overdosed by symptoms. Current dose is 0.5 grain and no aches.

Problem - I am a teacher and seem to cope during term but on holidays it all goes haywire and I am ill with symptoms of hyper. Have to come off everything and start again by which time holiday is lost. Back to work, things get back on track again.

Any suggestions as to why this is happening? Might it be stress related and linked to adrenals? Have been considering pregnenolone for sleep and energy. Since bereavement (now 4.5 years ago) my whole sleep pattern changed and I still have difficulty getting to sleep and sleeping soundly. One other physical change within last year is loss of inner to mid eyebrow hair.

Apologies for long post, just trying to give relevant info.

6 Replies

  • You need a lot more information on which to make a decision about what you ought to do before launching into taking steroids.

    Have you had any thyroid testing since starting to self-treat? Your dose has varied a lot and is currently really tiny. People can get what seem to be hyper symptoms on thyroid treatment despite low thyroid hormone levels. The cause is often low vitamins and minerals and/or the wrong levels of cortisol for good health. Taking a steroid without checking all the other things are fine first is not a good move.

    Do you have any recent vitamin and mineral test results?

    Have you ever done a saliva cortisol test (a private test)? High cortisol and low cortisol have some symptoms in common, and it isn't possible to guess which you have on the basis of symptoms, it must be tested.

  • Thanks for your reply, human bean. 

    Dr. tested my blood for just about every vitamin and mineral without asking if I was taking supplements and also for some obscure conditions. They were all within normal range as I expected. It is not practice policy to test t3 and t4 when TSH is within range so I have to pay to have them done. Seems pointless because of fluctuations.

    I do find it quite difficult to distinguish the symptoms of hyper and hypo and tend just to know that I am not right. Most times things improve when I ease back rather than taking more. My requirements are also seasonal, taking a higher dose in winter than summer. Previous two summers took 3/4 to 1 grain.

    Had considered cortisol problems and feel sure that my high point of the day is evening, hence sleeping problems. Where is best to get a saliva test? Who would interpret results and advise regarding treatment?

    Sorry, such a nuisance not to have a Dr. with an open mind.

  • You are legally entitled to have copies of blood test results. Ask the receptionists at the surgery during a quiet time, not when they are really busy. Do be prepared for them to insist on asking the doctor's permission first, which they have to do. Then phone up the next day (when they are not likely to be busy) to ask if the results are now ready for collection. Some surgeries are quite amenable to giving copies of results, some put up lots of barriers. Some surgeries charge for paper and ink but it shouldn't cost a lot - a pound or two, no more.

    There is another alternative that works for some people. It might be possible to register to see coded results online from your medical records. You need to get the information, codes, links etc set up by your surgery. Take proof of identity with a picture with you.

    Once you have copies of blood tests post the results in a new post on here and ask for feedback.

    Just being in range is not enough for vitamins and minerals. For example, a ferritin level of 25 with a range of (15 - 150) is in range, but it isn't sufficient to allow your body to make use of thyroid hormones properly, and your ability to convert from T4 to T3 is drastically impaired. Ferritin needs to be at least 70, and better still is 80 - 100.

    Different minerals and vitamins have different optimal levels. Mid-range is good for some things, top quarter of the range is good for others, and for vitamin B12 the reference ranges are absurdly low in the UK and you need to be over the range to get the most benefit.

    If you have some recent TSH/Free T3/Free T4 levels we can comment on those too.

    Regarding cortisol, there is a saliva cortisol test that can be done with Genova Diagnostics UK.

    For information on how to order and how to get a discount, see here :

    Interpretation of the saliva cortisol results is more difficult than the vitamins, minerals, and thyroid results. And treatment suggestions are difficult too. But we do our best.

    There are a couple of ways of testing cortisol, and they are not equivalent. Note that cortisol output has a 24-hour circadian rhythm.

    People can have (for example) good levels at 5am, too little at noon, and too much at 11pm. The way the NHS tests cortisol is to do a single blood test first thing in the morning, and make all decisions based on that. What happens the rest of the day is considered irrelevant. If you got stuck in a traffic jam and your cortisol shot up the result won't be normal for you, but it will be taken as gospel truth.

    The other thing about the blood test is it measures the sum of the cortisol in a bound and unbound state. Cortisol is carried around the body attached (bound) to proteins (I think - I'm very hazy on the details). It is only when it is detached (unbound) from these transport proteins that your body can use it.

    The alternative is to do a saliva test. You provide a sample of spit, 4 times throughout the day at set intervals. The cortisol found in spit is only the unbound cortisol - the stuff your body can actually use. NASA uses saliva sampling for testing their astronauts. The NHS considers it to be dangerous alternative medicine, and pay no attention to it at all - except for those occasions when they want a cortisol level in the middle of the night, then saliva is fine!

  • look on thyroid uk website at private testing. genovo diagnostics d0 a saliva test (4 samples at certain times throughout day) for adrenal profile. Its £77 through thyroid uk. Blue horizon do several diffent thyroid tests and I do think you should get the thyroid 10 (£89 use tuk 10 code) at least and see whats going on at the moment. I understand dosing by symptoms etc I really do but think it best you find out whats going on as you are having to alter your dose a lot and as you say have never felt well, just not as ill [know that one :)]  I am another self medicater but there are many ways to help your adrenals before thinking of steriods :O And first you need to know the sort of help they need :D 

    IMHO do the tests when you can and post results on here. There a lot of very knowledgable people on here who can interpret and advise.

    as I say this is just my opinion and good luck


  • Hi, you haven't mentioned if you have had your B12 tested - a swollen tongue can be a symptom as well as many overlapping thyroid symptoms.  how about your Vit D, ferritin and folate?

  • Wow, thanks everyone for your replies, especially humanbean for giving such a detailed response. You have all given me sound advice and lots of new avenues to explore.

    I will pursue my test results from the surgery first. I think I can register to access them online. Will put them into a new post for advice.

    Cortisol test and probably TSH only next. Will definitely need help to interpret the results and this seems to be the place to find that.

    Big thanks for the advice. I now have a clear plan rather than floundering.

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