Diagnosing underactive thyroid

Does anyone have any advice for me? I have ALL the symptoms of underactive thyroid and have been suffering for years , but blood tests always come back normal. Recently the ENT doctor suggested I ask for a referral to an endocrinologist, because my voice is so hoarse. She ordered another blood test, and I came off kelp for 8 days before the blood test. By that time I felt so bad, I forgot to start taking the kelp again for a few weeks. My hair fell out, I got coarse, dry patches on my skin, I put on more weight, my voice got much, much worse, worse constipation, so tired I could barely move, terrible depression, etc. Then I started taking kelp again and immediately began to feel better. Has anyone been diagnosed with underactive thyroid even though the blood tests are normal. Kelp helps, but only so much.

30 Replies

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  • You may get diagnosed privately but I am afraid in my experience (and many others) if your NHS blood tests are in their "normal" range then you are, and always will be "normal" regardless of how bad your symptoms are.

    You will get much help here but you will need to post your results, with ranges, or get some private blood tests done. Again, you will need to post the results with their ranges :-)

  • I would checkout a guy on YouTube called Dr John Bergman. He says it not about the thyroid!

  • Hi, I am not sure why you would say that, whether you are being sarcastic or not? :-)

    Is he the chiropractor? I have not seen many of his videos and I find it hard to listen to someone saying that kind of thing when he himself looks pretty unhealthy. If someone talks about things in such great detail then they should be the picture of health imho :-)

    Bit like a dentist I saw who had the most horrendous bad breath!

    Having not seen the video/s in which he says it is "not the thyroid", does he mean all thyroid conditions are not caused by the thyroid? If that were true and people believed him, then I assume those people would not take any form of thyroid meds etc. Not sure if you take any? If you are, I am sure you are treating symptoms that you feel is to do with your thyroid, like many of us.

    Having recently started on NDT I believe I do have a thyroid problem and would not dream of advising people to look up someone who said that unless I supported the same view :-)

    What does he say it is instead?

  • No I'm not being sarcastic. Yes he doesn't look right well perhaps due to being In a near fatal car accident, which I think made him turn to chiropractice. He says its a lot of stuff. 1) chronic fatigue ME or hypothyroidism is brought on by chronic stress whic I relate to, and the chronic fatigue clinic als admitted. 2) both estrogen and poly unsaturated fats inhibit thyroid function. 3) poly unsaturated fats also limit cholesterol production, which the adrenals use to make hormones to deal with stress.. 4) chemicals such as in vaccines and food stuffs in the form of pesticides are harmful. 5) modern medicine is split into separate specialisms and not much holistic stuff goes on.

    I have been unsuccessfully treated for hypo for 10 years. Do you think it's a coincidence that Levo is one of the most prescribed drugs on the planet? It's also a lot cheaper and less effective than NDT iimho..

    Just trying to help you!

  • OK, no worries. So if we out the things you list, we will all be well. Give up levo (i have never taken that) and I presume NDT or is that ok with him?

    I think he looks very well if he was in a near fatal accident, many people would be crippled. I was referring to him being a little overweight, which is fine by me but not so fine when educating people on how to be healthy. Of course, that is just my opinion :-) but I just like people to practice what they preach.

    Sorry, but after 30 or so years of suffering and made to feel I have been "making it all up". I was diagnosed with CFS by Kings in 2005 (which I have NEVER believed I had and was instead, I believe, undiagnosed hypothyroidism) and went through their "treatment" which was basically trying to get me to "think" it was all in my head and carry on regardless (CBT ) etc, I am a little bit prickly when it comes to being told it "aint" the thyroid.

    Have you followed his advice? I would be interested to know if it helps without taking levo or NDT :-)

  • I don't think that's what Jackie101 meant. Many environmental "problems" can inhibit thyroid hormones without it being the thyoid itself that it is at fault - probably especially true for people who have repeated euthyroid blood tests but lots of symptoms. The thyroid gland might be fine, but the problem is with the pituitary, hypothalamus or, most likely, the gut. And some people really do have an iodine deficiency - rare in the UK these days, but not in countries where they add bromide to flour, for example. Xenoestrogens are everywhere and most Western countries tell people to eat far too many omega 6 fats.

    Doesn't mean that diagnosed hypo people on meds should stop them.

  • The thing is I like people to practice what they preach and I am interested to hear peoples experience of certain protocols, especially if they refer people to them.

    Therefore, when someone posts such a short blanket statement without an explanation as to why they are advising someone to check something out, it creates interaction and questions. I feel it is then only reasonable for those questions to be answered. I believe that is generally how forums work.

    All sorts of great advice is given on this forum and posts that contain advice regarding looking into something usually have an explanation as to why someone might be interested in taking a look. The people that post the advice also answer any questions that may follow without taking offence or not answering.

    So what about undiagnosed hypo people on meds? If you need to be 'diagnosed' hypo to be on meds, diagnosed by who? You seem to be saying that if you are not 'diagnosed' as being hypo then you cannot possibly have anything wrong with the thyroid and should not be on meds?

  • Diagnosed by a person - yourself or a medical professional (or even a friend or relative if you are that trusting). If not even YOU have diagnosed yourself (let aone a medical professional) where do the meds come from?

    Personally, I avoid gluten, fluoride and chlorine (very difficult to do) xenoestrogens (as far as possible) and try to support my adrenals with meditation and glandulars as well as taking my thyroid meds.

    We know that, for example, low B12, can give symptoms similar to hypo, so you might decide that, in spite of symptoms, you'd rather try optmising nutrition first, instead of medicating with euthyroid bloods. It's all personal choice.

  • Euthyroid means normal thyroid function according to ranges set by the powers that be. Personally I do not like the word, it does not mean OPTIMUM thyroid function which many people need in order to feel well. It does not reflect, for example, a problem with T4 to T3 conversion unless the results are read correctly.

    Unfortunately, the majority of medical professionals do not seem to read results correctly and those people who have levels that are suboptimal are told they are normal, often for years. I fee that is wrong.

    Personally, I have been diagnosed by a medical professional and any meds I take have been prescribed by him on a private prescription.

    I am more than happy to take advice from experienced friends on this forum and they have been spot on with regards to what my private doctor has said.

    I would also be very interested to hear about people who have taken steps that have cured them or made them feel completely well WITHOUT also taking any thyroid meds at the same time (be it levo or glandulars [NDT]). I have tried many things over 30 odd years with no success and have never had medical treatment, so I am going with the meds :-)

  • I would prefer to have no diagnosis at all rather than a diagnosis of Chronic Fatigue Syndrome or ME.

    Did you know that people with either of those diagnoses in the UK are deemed to be mentally ill, lazy hypochondriacs? Once such a diagnosis is on your health records getting treated for anything is practically impossible.

    On an ME forum I read an anecdote from a patient who had ME. He fell and broke a rib and the bone was sticking out of his chest. The local hospital knew he had ME/CFS. When he went to A&E the medical staff and the nursing staff refused to even look at his ribs and told him if he didn't leave they would call security to have him ejected.

  • Tell me about it and how awful for that man!

    I felt it was a total fob off diagnosis but being young and shyish i went along with it. CBT was laughable in my experience.

  • In many cases CBT for ME is just bullying and brainwashing by another name as far as I can tell.

    The research that showed that it helped (the PACE study) turned out to be a pile of poo from start to finish but it took a 5-year battle for sufferers to get access to some of the data the results were based on.

    There are plenty of people still defending the study though. :(

  • It is demeaning. They took 10 sessions to basically tell me "you say you are tired, we don't believe you, so go away and live a normal life with a few breaks (pacing), and stop complaining, bye."

  • Good grief! :(

  • It's dreadful. A friend of mine went for it because of constant pain (she'd had various things including some sort of twisted bowel and she'd needed iron infusions). They convinced her to ignore it and a couple of months (or was it just weeks) later she died - of another twisted bowel.

  • Over here in finland they will happily diagnose CFS and get a sick leave. But there is ridiculous catch. You have to take antidepressants and prove using them by blood tests. Even though it's labeled as neurological disease and known that antidepressants worsen CFS.

    So most with CFS will get sick leave with severe depression, no antidepressants needed, but that diagnosis hunt you down for the rest of your life.

    Either way no one wants to have anything to do with you. And only handful of doctors treat you with respect.

  • Antidepressants were part of the 'treatment' when I was diagnosed. No idea if they still are.

  • Hypothyroidism might sometimes be brought on by stress. But not always. What about Hashi's?

  • At the chronic fatigue clinic they said CFS, or ME was often brought about by stress.. Which ties in with what Bergman says. He says the stress can be physical, chemical, or emotional..

  • Yes, but we're talking about thyroid.

  • True, but not only the thyroid is involved with metabolism. I've always been over-sensitive to caffeine, strong coffee would give me palpitations, and it didn't feel safe. Caffiene stimulates the adrenals which are directly connected to the thyroid. Modern Dr's see everything on it's own, not part of an holistic whole..

  • Well, yes, all of this is true. But, making a bald statement that 'it's not the thyroid', is a little over the top, don't you think. These things have to be taken case by case.

  • Not really, if you understand the effect certain foods have on our system. We are currently consuming a whole load of food such as refined white flour, sugar, pesticides, GMO that our digestive system isn't designed to cope with. I believe not just from Bergman, that the diets we have make a lot of people ill in different ways.. I think you meant bold!

  • No, I meant what I said.

    My apologies to Protea for squatting her thread. :)

  • Welcome to our forum,

    Many of our members have been in the same boat. Awful symptoms unrecognised by the GP and TSH not high enough.

    This is due to the doctors very poor training about dysfunctions of the thyroid gland and ignorance of symptoms, the emphasis being put on the TSH alone. Even worse is that in the UK the TSH has to reach 10 before being diagnosed when, in other countries patients are diagnosed if TSH is around 3 with symptoms.

    Blood tests for thyroid hormones have to be at the very earliest possible, fasting and if you were taking thyroid hormones, you'd allow a gap of 24 hours from your last dose and the test and take them afterwards.

    Ask GP to test TSH, T4, T3, Free T4, Free T3 and thyroid antibodies (sometimes labs wont do some if TSH is 'normal' but if you can afford it you can get tests from a private recommended lab.

    Also ask GP to test B12, Vit D, iron, ferritin and folate as deficiences can cause clinical symptoms.

    Get aprint-out and post for comments. Also tick off your symptoms on the first link and give both to GP. You can say you've taken advice from the NHS Choices for help advise Thyroiduk.org.uk.

    thyroiduk.org.uk/tuk/testin...

    thyroiduk.org.uk/tuk/testin...

  • Kelp contains iodine. if you are deficient in iodine then fair enough you need to take supplemental iodine in some form. Although personally I'd prefer to take Lugol's or some other form of iodine intended to be taken as a supplement, rather than kelp.

    But I would be surprised if you had had a test to find out whether you are deficient in iodine. Very few people get such a test done. And when people do test they are often advised to take the iodine loading test which shows over 90% of people are deficient in iodine. It is a bad test. See this link :

    townsendletter.com/Jan2013/...

    The problem with supplementing iodine in people who are not deficient is that it revs up the production of thyroid hormone in people who may already have a suffering thyroid. It is a particularly bad idea to take iodine if you have autoimmune thyroiditis.

    Autoimmune attacks on the thyroid will eventually destroy the thyroid. Add iodine to the mix and it speeds up the destruction.

    You really need to find out whether you have an iodine deficiency before taking kelp again. And avoid the loading test.

    When you've had some time to get the kelp out of your system, you should have a complete set of thyroid function tests and nutrient tests done, if at all possible. If your doctor insists on doing just TSH he/she can leave you very ill.

    ****

    If you can afford to get a private finger-prick test done, then post the results on here in a new post, we can help you on the road to feeling better.

    thyroiduk.org.uk/tuk/testin...

    Blue Horizon (BH) :

    bluehorizonmedicals.co.uk/T...

    bluehorizonmedicals.co.uk/W...

    Medichecks (MC) :

    medichecks.com/thyroid-func...

    medichecks.com/how-it-works

    medichecks.com/dl/Medicheck...

    BH offers vacutainer kits (for taking a sample from a vein in the arm) as well as finger prick kits, but you have to arrange for someone to take blood for you. It can be arranged at a price in various ways (including through BH), but if you know someone who can do it for you then you may find that easier than the finger-prick testing.

    ****

    It is a good idea to ask your surgery if you can access coded information from your medical records online. If you can then you need to show some proof of identity, and get some codes from your surgery which allows you to register.

    If your GP doesn't offer this service (many of them are dragging their heels on this), then ask for copies of any blood tests results from the last 2 or 3 years. You need to make sure the reference ranges are included. You will need to show proof of identity when you ask and when you collect any print outs. Receptionists have to ask a doctor's permission before supplying information from medical records so expect to get the results the next day, not at the time you ask.

  • phew you really are dealing with so much. I am newly diagnosed with underactive thyroid. I am not sure what all the terminology for blood tests are, but the one that revealed my problem was a check of antibodies which was apparently off the scale. Otherwise the regular tests were seen as within range and nothing to be done. Even though I had similar problems as yourself. Go request that your antibodies be checked now. Good luck, filenada

  • I can sympathise. From the age of 35 I had a growing list of hypo symptoms....you all know what they are....but I could not convince several GPs that I was ill. My TSH was always in the normal range so therefore I did not have a problem in their eyes. Once I was just inside the normal range and I asked the GP "I accept that but how do you know that I have not moved right from the other end of normal to current levels thus having a huge change in level?". He just said he had to go by the NHS guidelines and therefore I was normal. I struggled for 22 years until the age of 57 when I nearly crashed the car three times on one journey because I fell asleep at the wheel. It was only then when my TSH was just outside normal that the GP said I was hypo. I have struggled on for another 10 years on Levo with lots of niggling symptoms. It was only when I met up with a family member who has Hashi that it all became clear.

    Private blood tests showed I have Hashi. Also I did not realise that my daughter's Psoriasis and Coeliac disease are all linked. Everybody has seen the dots but no-one has joined the dots.

    I hope you do have better luck.

  • You are not alone and many of us have had same. l am still being investigated after 40 yrs of complaining. l was fortunate as was treated for 20 years by a Healer who was bril on female probs - then suddenly taken from us 4 years ago - and have just gone downhill. Dr J Mercola (mercola.com) says in his book that UK Thyroid test is unreliable. GPs only give a basic Test and if you are on lowest figures GP will insist its normal or even when its below - but what is 'normal' for you may be different. Also different Labs quote different figures. l saw an Endo who first asked for a more extended test which showed Low cortisol. This was ignored after a Hospital test declared: nothing wrong as others have said. Silly Endo said l must have ME after giving her a list of female symptoms over years, and being continually ignored by GP who doest listen.

    My research now throws up l seem to have a 'Pituitary' issue. l have asked for a meeting wth Practice Mgr & GP after writing a letter. Waiting for this. I have found that taking VitD spray helps with falling hair: Better You DLux from Amazon or H&B. Reviews on Amaz made me try as 2 said it made thyroid better and stopped falling hair. Recommends dble dose for first week or two. lt has helped me and falling hair is lot less - may mean we need be outside more. Good luck, you need to persist too

  • "normal" means ZILCH

    Always get the exact test results and reference ranges bcos all too often all that tested is TSH which can never ever diagnose CENTRAL or TERTIARY hypothyroid

    its nothing like as rare as they think and most GPs are far too ignorant of its impact

    4 of the 5 hypos in my family all have CENTRAL hypothyroid hence i know what i am talking about

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