Nowhere to turn.....(sorry in advance for rambling) - except here of course :o)

I can hardly string my thought together any more, so please forgive my possible wall of text coupled with lack of succinct-ness and failure to get to the point.

As I posted before (not sure if it's possible/how to link that thread within this post), I have - since 2010 - been trying to understand and get help from a Doctor (cannot say "my" as, at last count, I have seen more than seven different ones within the Practice), suspecting that I have a self-inflicted thyroid problem.

Of course, classed as Depressed/Anxious, I cannot possibly have any kind of physical problem.

I saw Dr P a couple of months ago and that, coupled with support on here, boosted my impetus a little. Enough that I headed back to the Surgery to request blood tests/help- again reported on here :o)

As far as Dr Barry's recommendations, I did purchase the Adrenal Support but felt quite afraid of taking it as it seemed to coincide with the pounding heartbeat (in the morning), so I stopped it. I do take everything else that he recommended but know that I am probably not going to improve any kind of adrenal problem without "medication".

After speaking to the GP that I saw (another new one) and effectively being brushed off again (as told before), I requesed he whole of my medical notes. This pompted a call from the Practice Manager, asking why I wanted them. After three weeks, I received a call that they were available for me to pick up - but after all that, I can't bring myself to. I know that it is a can of worms that I won't even be able to tackle - especially in my present state of mind. I have though, started a letter to the Practice Manager to "complain" (without using that actual word if I can help it), primarily about a previous occasion when a Dr who had said that he would test T3 levels, sent a receptionist out to tell me in front of a waiting room of people that No, he wouldn't get T3 tested and I should arrange to come and see another (female) GP about HRT :o( and also - sadly, now - about this most recent visit when the GP told me he would request Thyroid Function Test and it turns out that he didn't even request it all (let alone refused to let me have copies of the blood test results that were done....) - but I only know this because I sneakily requested print outs from reception staff when I took in my access to medical notes application. Seeing no thryroid tests, I called back to check and was told (by recep.) that No, not requested.

So this ^^ is why I don't know where to go - and to put it mildly, I am getting worse by the day - so much so that I cannot see a way forward.

As usual for me, this is probably more of a general whinge and wish for support than any grand expectation but I welcome any input that anoyone may care to take the trouble to offer.

x

10 Replies

oldestnewest
  • Dumbblonde, Pick up your medical records. It's not opening a can of worms, it's empowering to see your history in front of you and can be helpful in tracking how many times you have presented with symptoms which may, or may not, be thyroid related and what investigations were made.

    All results requested within 40 days of a test should be available to a patient with the lab ref ranges free of charge other than a nominal £1/£2 to cover the cost of printer ink and paper.

    Many labs will not test FT3 unless TSH is suppressed. You can order a private test from Blue Horizon or Genova via thyroiduk.org.uk/tuk/testin...

    Have you tried halving the dose of the adrenal suppport Dr. P advised you to take? Some members have advised that Nutri Adrenal Extra is too strong but taking a reduced dose can help.

    Finally, is there one GP at the practice you feel is helpful that you could see regularly. I feel that continuity of care is very important. If the answer is no, you should consider changing GP practice.

  • I am sorry you are having problems with the surgery and Clutter has made some good suggestions.

    I just wanted to point out the Vitamin C has been found to reduce cortisol levels maybe it would help your adrenals.

    stopthethyroidmadness.com/2...

  • Thank you to both Clutter and shaws - your words of advice are greatly appreciated.

    There is so much more to my problems than th issues with the Dr(s); it has now reached the stage where I literally feel unable to attempt to get help with this matter - but physically everything is falling apart and my descent is gathering pace. I fear very much my problem is a hormonal/pituitary one and will not be fixed without more than the supplements that I am taking.

    (Heck - I may even have something else wrong with me - but now quite categorically lablled Hypochondriac, I just think that they wouldn't help me with anything.)

    I have now reached a point where - NOT MATTER WHAT I DO - I start the day - 6:00am, cannot sleep longer.... - like a reasonably shaped person (albeit double the size I was in 2011) - within 1-2 hours, I have ballooned and have ?fat? (it can't be, but it looks like it) in an area where I never have - my belly and lower abdomen. If I eat something - out of hunger, not because I want to - this will either sit in my abdomen or pass immediiately through my stomach (no acids?) to the next level where attempts for it to be digested are agonising. I feel as though I am wearing those hip pads that Elizabeth i had underneath her gowns - and an awaful band of "wobble" around my lower abdomen. It's so unpleasant and I cannot help but think that there is more to this than the food I eat - or don't (am coming close to stopping altogether.....).

    Part of the 6:00am thing is that it is the only time I will go out and attempt to "run" (again, something I used to do quite easily but now - between no breath and big boobs - let alone feeling stupid - I do "interval training" without meaning or wanting to.

    (And please don't see this running business as me being OK - I am not and every daythat I try to do it is Hell; I just don't know what else to do... But I have been doing it a least 5 days a week for the since 5 May - and the scales are going UP!!!)

    How can I get a Dr to even listen to this???

    When I touched on it at the last appointment, he said I must be "out of condition" and utterly misunderstood when I said that Imight be wasting my tme, taking i as me looking for a get out rather than me being clear enough and saying that I am possibly trying to push water uphill - IF I HAVE A THYROID PROBLEM.....

    (Didn't even have enough about me to point out that I am - well, was - a fully trained aerobics instructor. Not that it matters now:o/)

    I have several other "symptoms" - like, at the moment, it feels as though there are hands squeezing my neck from the inside, if I lean on something, it leaves indents in my skin for a long long time - and, despite the sun [not that I go out in it], I am pale/grey/yelllowish in colour.

    I KNOW that none of this is pain as such and people have far worse symptoms and conditions that me - but I do feel that I am spiralling out of control and no matter what I do, something bad is happening.

    (*My dear friend died a few years ago - the only symptom she had of metastatic liver cancer was her belly blowing up through the day, until it stayed that way until she was taken into hospital, sent home again for fear of MRSA, taken back in again, had fluid drained and then died. She said that she was never in any pain. Still dead though - and the appointment for her scan came through after her funeral.)

    xx

  • Dumbblonde, When you have your medical records post your thyroid results with the lab ref ranges and members will advise. If you are hypothyroid, which your symptoms suggest, and your GP will not prescribe replacement thyroid hormone you may need to consider taking matters into your own control and self medicating.

    I'm sorry for the loss of your friend. I think your description of your swelling an hour or so after rising and presumably subsiding overnight is a different thing altogether and it can be a hypothyroid symptom.

  • I am sorry about your friend and sometimes things like that happen. I have posted a lot below so don't let it overwhelm you. Just read a little bit over the next few days. If I don't link today I will probably not get back to it.

    Ask your GP to refer you to an Endocrinologist (email louise.warvill@thyroiduk.org who has a list of NHS Endos/private) you need to have your neck palpated because you are having problems. As well as other clinical symptoms of hypo.

    You have to have a thyroid gland test first thing in the morning as TSH is highest then. Even if it's not high enough doesn't mean you don't have hypo.

    The problem is the guidelines the GPs (and Endos) have to follow - to diagnose only by the TSH. So in turn they become very unsympathetic and some people take years until their TSH gets to 10. The unnecessary suffering is an abomination.

    These are a couple of excerpts but as doctors may be ignorant about the function of the thyroid gland, at least we on this forum are learning more about it:-

    1. You can also have a variety of blood tests to see if your results are consistent with hypothyroidism. For example, you measure your cholesterol and LDL levels. These are high in many people who have wholesome diets and exercise regularly but are under-treated by thyroid hormone. You can have your erythropoietin measured. This is a protein that may be low when under-regulation by thyroid hormone has decreased the oxygen requirement of your tissues. And you can have your anti-thyroid antibody levels measured to see if they are high.

    2.You notice that I didn’t include blood tests for your TSH, free T4, and free T3 levels. These tests are of limited value. They are meaningful only when they are way out of range. If they are in-range or close to in-range, they are useless in telling your whether you have enough thyroid hormone regulation. The only thing they tell us is the effect of the pituitary’s TSH on the thyroid gland, and the effect of the thyroid gland’s hormones on the pituitary. They tell us nothing whatever about the effects of thyroid hormone on the cells of any other body tissues. To infer from the levels of these hormones the thyroid or metabolic status of other tissues is not only indirect—it’s a wild and scientifically-unsound inference.

    3. We have plenty of tests that indirectly measure the cellular effects of thyroid hormone, and they are far more diagnostically meaningful than using the TSH, free T4, and free T3.

    When you asked your doctor that question, you were on the right track. He, on the other hand, was way off track. It appears that he was taking part in the modern medical disaster I’ve called the “endocrinology paradigm of hypothyroidism.”[1] From participating in that disaster, he undoubtedly didn’t have the information you asked for, despite it being readily available to any inquisitive person, especially doctors. You’ve undoubtedly suffered from his neglect. I regret that and hope you'll move on to a better educated doctor who can help you recover good health.

    4.The most common skin change is a generalized myxedema or swelling due to a build up of ground substance in the foundation of the skin (dermis). The skin is swollen, dry, pale and waxy. One can slowly develop a broad nose, swollen lips and puffy eyelids. Wounds heal slowly.

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

    Skin Changes in Hypothyroidism

    Pale, cold, scaly, wrinkled skin

    Coarse, dry scalp and hair

    Absence of sweating

    Hair loss - scalp groin, lateral eyebrows, etc.

    Skin colour - ivory - yellow

    Puffy edema (hands, face, eyelids)

    Brittle thick nails

    Eczema craquele

    Bruising

    Poor wound healing

    Thyroid disorders are sometimes associated with other diseases and skin changes

    thyroid.ca/e9b.php.

    thyroiduk.org.uk/tuk/diagno...

    thyroiduk.org.uk/tuk/about_...

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

    Run off the last three, tick all of your symptoms and make new appointment and request a referral by someone you have selected.

  • shaws :o) - thank you. This is brief to acknowledge your wonderful help; I shall read and absorb as you suggest.

    I suppose that I can feel myself sinking, hence the extra-dperessing thoughts and (possibly) ?catastrophising (thinking I have what Jennifer had....).

    :o)

    x

  • Depressing thoughts are a symptom of hypo. But then, what isn't! When you are deficient in thyroid hormones, nothing works properly anymore.

    Might I respectfully suggest that you give up the running? Two reasons.

    1. It uses up your precious hormones - all of them - but you, it would seem, don't have enough thyroid hormones to begin with. If you use up the little that you have by running, then what is left for the rest? In a person with a normally functioning thyroid, they can make up the deficite in hormones as needed. If you have a compromised thyroid gland, you can't do that. So, you become even more hypo than you were before you went out for a run.

    2. It also uses up your precious calories! Now, you might say that this is the whole point. lol BUT you have said that you aren't eating much, therefore you don't ingest many calories. And all your bodily functions need calories. Breathing, digesting, circulating the blood... and conversion of what little T4 your thyroid is managing to produce into the T3 that your body desperately needs. So, once again, you become more hypo.

    No matter how much you exercise, it is NOT going to make you lose weight. Nor is dieting. Forget calories in vs calories out, that just doesn't work anymore if you're hypo. You say you hardly eat and yet you are putting on more weight. This is hypo. This is how it works. The only thing that is going to work is replacing the hormones that your body can no longer make.

    So try stopping the running for a while and see how you feel. Maybe just have a gentle walk instead.

    And may I ask what you are eating? Are you getting enough fat, salt and protein? Hypos need more protein than the average person. Don't be afraid of salt, your adrenals need it. And don't be afraid of fat. Eating fat doesn't make you fat. It is necessary for making hormones and maintaining the delecate hormonal balance - which is already upset enough by being hypo.

    Shaws has given you some wonderful advice so I do hope you find some solutions soon.

    Hugs, Grey

  • Grey :o) ~ thank you.

    I have somehow ended up with so many food issues, that i don't doubt that this has contributed to my thyroid/metabolic problem. I am also vegetarian *sigh*

    I would be embarassed to post publicly my diet - although I am acutely aware of how nutritionally inadequate it is.

    That said, I am not a BigMac/chipshop person at all, in fact, I cannot remember the last time I actually had what might be known as a meal (yesterday even lentil soup caused stabbing stmach pains....)

    Example today - I have had (warily, first time) a bowl of bran flakes - unusual for me as I don't really like or agree with cereal - with "pure" s/sk milk. Since then, I had a half a med-size tub of natural yoghurt (again, risky) and added half small punnet of blueberries.

    I had a small glass of orange juice and have had two cups of liquorice tea. This is another attempt at getting off coffee - which I actually find easy to do, it is just a sort of habit/punctuating the day-type thing...

    Later I may have some salad and a couple of eggs and a 2-bar Kit Kat.

    On Dr Barry's instruction and because I KNOW I am lacking a lot, I do take:

    1000mg Vit C (with Zinc)

    A Perfectil Multi-Vitamin

    Co-Enzyme Q10

    2 x 25micrograms D3

    1000iu B12

    1tsp FerroGlobin

    plus 10mg B6 (in the mornings)

    and I keep trying with the Nutri Adrenal Extra - just 1 tablet.

    I am so worried to give up the "running" as it is is as much a mental thing as anything else, but I can easily (haha) downgrade it to a walk. I also cycle quite a bit as I would go mad - even though I feel such a fool - with how depressing my life is if I didn;t get out there by some means.

    I never really thought of it in the way you have explained but it makes perfect sense.

    It is similar to my attempt to donate blood earlier this year (which I have done for all of my adult life) and when they refused due to ?low iron - or whatever their test is - I was told sympathetically, "It's not that we don't want your blood, but you need it more". This is something else that the GP just shrugged at.

    How can I get thyroid hormones working again if I can't get a GP to help me and can't get ?T3.....?

    x

  • Nutrition is a mine-field. Doctors know nothing about it, and I even think most nutritionists don’t either! It’s just that I’ve taken a special interest in it since having problems of my own. I know how it feels when you feel sick just eating the tiniest, blandest thing possible. But I think that’s part of the hypo, too.

    And, yes, being a vegetarian doesn’t help, either. I do understand not wanting to eat animals but the sad fact is that we are omnivores and programmed to eat meat. I went veggie once and it was the worst thing I ever did for my health. My hypo went rapidly downhill at that point – although I didn’t know what it was at the time, I just knew I was ill and ‘friends’ were telling me to see a psychiatrist! Even today, I don’t eat much meat but eat it if someone else cooks it! Hypocritical or what! Lol Anyway, apart from that…

    Sorry, but what is s/sk milk? Is it soy? If it is, that could be causing some of your problems. Soy isn’t recommended for hypos – and I wouldn’t recommend it for anyone! But that’s another story.

    A lot of people don’t handle dairy very well, so maybe the yoghurt wasn’t a very good choice? Have you tried giving up dairy? Just to see how you feel. You see, nutrition is a matter of trial and error. We don’t all like or thrive on the same things. In fact, I expect you’ve seen that someone related blood type to diet. But I don’t recommend that. Just saying that we’re all different and we have to find what works for us as individuals.

    Plus the so-called specialist are always changing their minds. First fat is bad, then it’s good. Then salt is bad, then they find we actually need it! Now, I’ve even seen someone saying that sugar isn’t as bad as it’s cracked up to be and our bodies need a little. So who do you believe? Your body! I’m a firm believer that the body knows what it needs. So listen to your body and let it guide you.

    Blueberries is good! All berries are good. Eggs are very good too. But I wouldn’t recommend Kit-Kat because it contains GMO ingredients. However, if you like chocolate, chocolate is good! Lol For one thing, it boosts your moral. For another it contains magnesium. Have a look at this.

    naturalnews.com/045922_dark...

    However, some people find they are affected by the soy lecithin – especially if it’s GMO. So choose your chocolate carefully.

    I’ve just weaned myself off tea. Not that I drank gallons of it (like my mum used to do!) but I do need a hot drink in the morning. So, what I do now is mix pure coco powder with coconut sugar (very good!!!) and add hot water to it. No need for milk. And it’s delicious. I look forward to that in the morning, although I don’t want eat breakfast.

    Does your multi-vitamin contain all the B vitamins? Because they should all be taken together, as they are all inter-dependent.

    Now as for the Nutri Adrenal… Oh dear, I go against so much public opinion here. Lol But I can’t see the point! I’ve never tried it, but I did try Nutri Thyroid – just so that I knew what I was talking about! And that gave me terrible stomach problems. So, you can imagine, it put me off trying Nutri Adrenal, even though I did have adrenal fatigue at the time. But the vit C is good for your adrenals and so is salt.

    I know what you mean about the running, but just tell yourself that you’re taking a temporary rest until you feel better. Cycling is not much better as exercising goes. Alright for people with little or no hormonal problems but…

    I used to give blood too when I was younger and fitter (ha ha but all things are relative!). But now I don’t think I’d be doing anyone a favour by giving them my blood! There is a lot of controversy about whether hypos should give blood or not but I definitely don’t think it’s a good idea if you have Hashi’s. But doctors are so ignorant about all things thyroid, and just generally supercilious and uncaring, that it doesn’t surprise me that your doctor didn’t react.

    I’m afraid the stark truth is that you can’t get your thyroid hormones going again if your thyroid is in some way compromised – unless you are iodine deficient, that is. They have to be replaced orally. The best thing you can possibly do, if your doctor won’t co-operate, is get tested yourself privately. Now, you already know that you are deficient in vitamins and minerals, and you are supplementing. That’s a good start. Now you need to know your thyroid status, as per Shaw’s suggestions. And you need to know your adrenal status. And while you’re at it, why not get iodine tested just to rule that out. Then, when you know where you stand, and you’ve read up on as much as you can, start self-treating. You can buy what you need on internet, and if you ask, people can tell you by pm where you can get it.

    And then, when you’re feeling better and have lost weight, you can go back to your doctor and say ‘there! you see, you ignorant pig! How come you couldn’t do this when I can!!!’ Well, perhaps not in those exact words, but you know what I mean. Lol

    If you have any other questions about nutrition, don’t hesitate to ask. Although I’m not an expert – I hasten to add – I might be able to answer some of them.

    Hugs, Grey x

  • Dear Grey - thank you again so much for your informative reply, you seem like an expert to me....:o)

    Lack of coffee has given me a big headache so I am going to read thoroughly tomorrow.

    You are (all) wonderful.

    x

You may also like...