Advice needed on thyroid testing, thanks!

Sorry to butt in on this conversation but I wonder if you could confirm something for me please. I've struggled for over 10 years to get a diagnosis of hypothyroidism but GPs blocked me all the way because my TSH wasn't raised enough but my fT4 dropped from 17 to 8.2 at it's lowest some years ago and has not really raised to more than 10 or 11 since then, only with Thyroxine treatment at a low dose of 50/75mcg. I keep asking for a fT3 but neither GP nor Endo will allow it. Now my GP has become very defensive towards me because my last TSH result has fallen to 0.05 and she tells me she has to lower my dose. Thing is over the past 5 or 6 years, my symptoms have become progressively worse and because I also have Fibromyalgia I'm told that's more likely to be the cause. I have gained over 4 stones in weight, my face is puffy, I feel very tired and sluggish as if I'm wading through mud when I walk, my body temperature is low of normal (35 -36.5C) and worst of all, I've lost most of my body hair especially my eyebrows and eyelashes. My head hair has thinned and breaks easily.

I have an appointment with my Endo in the morning, should I request a full panel of bloods as listed above or would fT3 be enough to confirm any more than TSH and fT4? Btw, I'm expecting hostility.

Regards Carol x

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  • Have been to appointment now but my Endo off sick so saw a locum. He's not an Endo, I'm being treated at a Metabolic Bone Disease Unit because there have been issues concerning my parathyroid too. Nine months ago, my Endo put me on a calcium supplement because she felt I have a malabsorbancy problem. Nobody has bothered to monitor my calcium levels throughout this time, although my GP was concerned at the time as to why. Yesterday, this locum said to me that my calcium level is low of normal at 2.3. That test was done last year before giving me the calcium supplement, and about ten days ago I believe I passed a kidney stone. The pain was excruciating, I was doubled up in agony, so much so that my back went into spasm and I'm now having problems walking because have trapped nerves across my lower spine. I told him all this (actually struggling on crutches which he could see) but he showed no interest and told me to continue with the calcium. I'm still experiencing urine blockage intermittently so feel I probably still have more stones. I had a calcium test at my surgery in December, the result was 2.56 (2.1-2.7), can anyone please tell me how this can be low of normal.

    I'm going to get a full panel blood tests done myself but I'm on benefits, could anyone advise cheapest testing labs please?

    Also, I do have a carer to help me in the mornings and she's very concerned about me. She wants me to go to A & E but I don't want to use valuable resources unnecessarily. What do you all think I should do? Would be grateful for your input, thanks.

    Sorry for waffling on in this post but I'm in such pain and desperate to be heard.

    Carol x

  • Carol go to the A&E. The locum was of no use to you. I think you have been misdiagnosed due to TSH alone. Just say that you feel very unwell and don't need to go into too many explanations except to say you are taking levo.

    If your carer is concerned about you , you are indeed very unwell. and forget about valuable resources. You are ill, undertreated (I believe) and you just need to say that you are very unwell.

    I personally think you need T3 but it's difficult to get that prescribed at present.

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

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

  • Hi Shaws, thanks for your advice you've helped me to feel like I'm not going mad after all. I will gladly take it.

    Can you please tell me what the links are because my server keeps blocking them?

    Thanks again, I'll let you know what happens when I am able.

    Carol x

  • The links are archived so maybe you cannot access them. Sometimes that happens. I'll see if I can open them and will let you know if I can.

  • I can access them so I'll give you an excerpt from the first:-

    October 12, 2010

    Question:Are fibromyalgia and hypothyroidism really linked? I think that they are. I have fibromyalgia and I also have weight gain, although I eat very little and have body swelling and many other symptoms of hypothyroidism. Conventional thyroid lab tests come back as normal, but I know in my gut I have a real thyroid problem. How can I get a more sophisticated, discerning thyroid testing done? I am in the UK? Thank you very much for your time.

    Dr. Lowe: Most patients’ fibromyalgia is definitely related to too little thyroid hormone regulation! For those patients, what we call “fibromyalgia” is largely a set of symptoms that develops from too little thyroid hormone regulation. The two essential symptoms are chronic widespread pain and abnormal tenderness. However, the so-called “associated fibromyalgia symptoms”[1,2] are each classic hypothyroid symptoms.

    Some patients’ inadequate thyroid hormone regulation occurs because of they have thyroid hormone deficiencies; for others, it occurs because of they have partial cellular resistance to thyroid hormone. In either case, the predominant symptoms can be widespread pain and tenderness. However, many fibromyalgia patients’ symptoms are worsened by lifestyle factors such as nutritional deficiencies and a pro-inflammatory diet, and various prescription drugs.

    The “more sophisticated, discerning” tests you ask about are for the most part not laboratory tests, although for some patients, various lab tests can be helpful. But the conventional laboratory thyroid function tests (TSH, free T3, and free T4) are largely useless unless one or more of the levels is way out of range.

    The important points are these: In-range TSH, free T3, and free T4 levels simply cannot logically rule out that a patient needs thyroid hormone therapy. And when a patient is undergoing thyroid hormone therapy, these test levels are not accurate gauges of the effectiveness of the therapy. "

    The other link is about Problems With T4 Therapy

  • Thank you so much for this, I have read about Dr Lowe but I need to do some research now.

    Carol x

  • Carol, just because your doctor tells you to take something, there's no law that says you have to take it if you feel it's the wrong thing. Your calcium is not low, but doctors know even less about nutrients than they do about thyroid!

    What I would advise you to do now, is get hold of some vit K2 - MK7 - best to look on Amazon for that - you obviously have a lot of calcium swimming around in your blood, and ending up in the wrong places. vit K2 will direct it into your bones and teeth, and away from your kidneys.

    This is the problem with taking calcium supplements - it really is a very bad idea, and probably won't help your bones, anyway - bones need a lot more nutrients than just calcium to be strong. But, if calcium is low, it's better to get it from food, rather than take supplements.

    Has your doctor tested your other nutrients : vit D, vit B12, folate and ferritin? Because they could all be low, too. And you need them to be optimal to be able to use the levo you're taking. If your vit D is low - which it very well could be - supplementing vit D3 will increase your absorption of calcium from food. But, you must take vit K2 - MK7 with it.

    I'm tempted to say very rude things about your doctor, because the reason you aren't absorbing nutrients is because she's keeping you on too low a dose of levo. She should know that, and she should not be dosing your levo by the TSH alone. She should be at least testing the FT4, even if she doesn't test FT3. When you are on thyroid hormone replacement, TSH is irrelevant unless it goes high. It doesn't matter how low it goes because it's not needed anymore. However, you should have your FT4 and FT3 tested at the same time, because that will tell you how well you are converting T4 to T3. But, with such a low dose of T4, it's almost certain that your FT3 will be low!

    When you have your tests, do you have them early in the morning, after fasting over night, and leaving a 24 hour gap between your last dose of levo and the blood draw? That's the way to get the highest possible TSH. Which, of course, is what we need with dumb doctors like yours! :)

  • Thanks for the info, very much appreciated. I've seen five GPs in my surgery, one of which was daring enough to try me on thyroxine about three years ago starting on a dose of 25mcg. She then retired a few months later and I miss her because she would listen and take account of my symptoms. Since then I've seen two more (there were two others previously to her) but they have no idea. Keeps quoting NHS guidelines to me and God help me if I mention anything to do with research or America. One of the previous doctors I saw was so dumb that when monitoring blood testing for a possible diagnosis for 'normocalcemic hyperparathyroidism' kept telling me there was nothing wrong with me because my calcium was 'normal' ...........it drove me crazy, even after pointing out to her that the condition actually states that my calcium is normal, she still would insist there was no need for testing. My rheumatologist had requested the ongoing testing and she ignored him. Have you heard of Dr James Norman at The Norman Parathyroid Clinic in Tampa, Florida? He's considered to be the number one endocrinologist in the world and he specialises in parathyroidectomy. His research has shown that untreated Parathyroid disease can result in breast cancer in women and prostate cancer in men. I'm still waiting for someone to sort out my diagnosis for over five years now, but meanwhile (back at the ranch), just under two years ago I was diagnosed with hormonal breast cancer and underwent a full left mastectomy. I'm still waiting for reconstruction, they won't do it yet as I'm too fat.........it's such a vicious circle.

    Taking the calcium supplement was meant to be for a short period to test for malabsorbancy, then my Endo went off work with sickness and didn't make note so someone else could follow up. Needless to say, I have stopped taking it. I do take multi-mineral supplement and recently started taking aThyroid boost mineral supplement. I've been taking VitD3 for over four years as I was found to be insufficient back then, my level is now in the 70s. My GP raised my levo to 100mcg in December but since my TSH hit 0.05 last month she said she will have to lower it again to 75mcg when I next have my bloods in a couple of weeks. I totally understand what you say about it being irrelevant, it's commonsense to me. Why would your pituitary make hormone to stimulate a thyroid that is being supported by medical thyroxine? They simply don't do commonsense. Btw, my T4 has not been higher than 13 for over ten years and that result was for less than three months.

    I'm thinking I have to start self medicating with T3. I'm going to get a full panel bloods done myself and go from there. I'll get K2 - MK7.

    Thanks for listening and all your advice

    Carol x

  • go back to your GP and tell her in no uncertain terms to research CENTRAL /PITUARITY HYPOTHYROID and then you want an apology in triplicate

    same goes for your endo

    both should know better

  • Thank you so much for that info, I've just seen a light at the end of my tunnel. GP even told me not to waste my money on private testing too. I can't wait to research this and stick it under her nose 😅...........better still up her nose.

    Carol x

  • CENTRAL /PITUARITY /SECONDARY Hypothyroid due to either pituarity or hypothalamus failure

    = LOW TSH LOW T4 LOW T3 .............Pituarity is unable to push out enough TSH to stimulate the thyroid to produce free T4 and free T3

    google search and google scholar search and put it under their noses

  • Hi, I have had systemic lupus for nearly 30 years (another autoimmune disease) one of the symptoms of this is loss of hair anywhere on the body. I lost 80% of the hair on my head, but some people do loose eyebrows etc. Other symptoms are feeling tired and sluggish exactly like wading through mud. Apparently suffering with thyroid problems you can get other auto immune illness - fibromyalgia being one of them, along with lupus, diabetes. I am also coeliac which I think is classed as another auto immune illness. I'm having the same fight with my doctor. I feel fatigued all the time, brain fog, muscle and joint aches and pain. I keep telling the doctors how ill I feel but keep getting the reply ' your bloods are fine' ! GP should have rung me yesterday about blood results at 3.50pm. I'm still waiting !! I've just phoned the surgery and the doctor isn't in until Monday ! At the end of the day you feel ill and you need them to help you - you must keep on fighting !!

  • Carol - not at all and l dont know nearly as much as many here and am waiting a morning of tests next month. What l can say is that for years l have had T4 on 10 out of 25 - and its never occurred to GP that l am always on lowest figure and there MUST be a reason for it! Or even, very last time was 8. The standard Thyroid test does not show up all problems. l always thought my tiredness since age 25 or before- was due to a thyroid hormone. But the delightful v.young Endo consultant sent me for further tests - which showed l had low Cortisol and this relates to Adrenals (all part of the circuit) and will not show up in ordinary thyroid tests- unless requested. Because results were reported to GP first, she cut in and told me to go for another (she has never believed me) and then was lower still, haha. When l did Reflexology training years ago l cdnt work till l was treated first, and l wd 'hit the roof' when anyone touched Adrenals and kidney area was always more than touchy as this is where stress goes for most people.

    Weight problems are a pain and l do seem tend that way, lost 2.5 stone with Slimming World couple years ago, but some has crept back. So many labs ignore doctor requests for T3 - as here - because its so expensive to prescribe but Consultant is now going to do it. l have battled about 7 GPs and another Endo over more than 40 years! And had to do a 'strop' before Xmas to get referred. l gather from NHS ex Mgr friend, doctors are paid not to do some tests

    Regards

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