Getting worse; follow-up with Consultant tomorrow but probably no point.... *update below*

Sorry all - I don't know the trick to insert my previous thread (in case it's worthwhile for anyone to read....).

Back in November I saw a Consultant (specialising in endocrinology and diabetes) who did a fair number of tests (but of course not including T3 - which I had done privately in February) and wrote a letter to the GP with the results (no f/up at all from the GP by the way...) effectively blaming everything on my poor psychological* state.

These are the most relevant test results -

Ferritin -

63 ug/L [10 -204]

Haemoglobin -

131 g/L [115 -160]

(Low in range MCV and MCH -----anemia??)

TSH -

1.97 mU/L [0.35 - 4.94] - This is down (how?) from >3 earlier in the year

Free T4 -

13.2 pmol/L [9.0 - 19.0]

B12 -

611 ng/L [187 - 883]

Cortisol -

202 nmol/L [101 - 536]

Vit D -

71.1 nmol/L [>75]

Folate -

12.3 ug/L [3/1 - 20.5]

(Things like lipids and glucose were not tested.)

The private T3 result (via Blue Horizon) was -

4.8 pmol/L [3.1 - 6.8]

I am really not sure why I'm going back. I fantasise that I might get asked if I am feeling any better (which I am not) and anything -- something -- else might be looked into because there CANNOT BE ANYTHING WRONG METABOLICALLY :o( But, based on my recent experiences (years' worth), I guess that I will spend this valuable appointment time justifying the referral, defending and explaining myself and trying NOT to mention internet research or any of my worsening physical symptoms (it's all in my head remember*) - especially if they could come under the "vanity" category.

Which brings me to the latest horrifying update regarding my hair; Which now hangs in limp, dry, mousey strands - the least breeze destroying the style I have spent hours and many products creating; and today, horror - I realised that my eyebrows (which I haven't plucked for years) are - um - fading away. (??) When I put my hand on my head, there is nothing there (well, there is - for now - but I can't feel it) - how did this happen??

I know that my eating "habits" (about one meal per week - psychological? physical? bit of both) are not helping. Rarely over 1000 calories per day otherwise I feel as though someone has applied a bean bag to my lower body.

So - this was just another of my rambling rants (truncated rather by my loss of the ability to type, it seems), although I would really welcome any kind of input or help from the lovelies of this forum.

xx

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  • Well your post made me laugh if nothing else, afraid we all fantasise about being asked how we are and something being done if we say not good!

    Your tsh is still too high for someone on meds and the free t4 is not in the top quarter, or just over range. You would expect it to be at least 16.5.. You need more meds. Until the t4 is at the top end of the range there isn't much chance of the free t3 raising. Dr toft. In his book understanding thyroid disorders said pretty much all of this.

    Dr toft has a respected pedigree and was at one time president of the British thyroid association.... There is time for you to download it and mark the relevant passages if you have a kindle, or a kindle app.

    amazon.co.uk/Thyroid-Disord...

    Xx g

  • You queried why your TSH had fallen from your previous test. If you haven't changed your dose then it might well be because your bloods were taken at a different time of day. TSH levels vary throughout the day so consistency is important here and it's recommended you have your bloods taken early in the day as TSH is usually highest then. Also are you stopping your medication 24 hours before your blood sample is taken. That way you won't get a spike which can be misleading. I should also up your calorie intake. If you are worried about gaining weight eating less isn't the answer. Weight gained is more likely to be caused by being under medicated which your results show. We are usually short of vitamins which are needed to help our cells to convert the T4 in our meds to the active T3 our body needs. At the moment this isn't ovviously your problem. As already been said raising your FT4 should help to raise your FT3 but in the meantime a well balanced diet can be most beneficial.

  • It's important to eat regularly during the day. The thyroid is linked to the adrenals and fasting can further stress the adrenals which may mean you have more problems converting your T4.

    Have you tried being gluten and dairy free? Maybe try being nightshade free as well as I noticed a big difference in my digestion and weight gain then. Also worth taking betain/pepsin with every meal as hypothyroidism usually means low stomach acid so we can't often extract the nutrients from our food.

    Good luck

  • Hi all -

    (So pleased to bring a smile galathea......)

    I am not on any thyroid medication :o/ as I "don't have a thyroid problem" (they say), so the advice re. meds etc. is kind of unnecessary at this point (although welcome) but I would be interested to know what these results might indicate given that I don't take anything? :o)

    [Hm yes, re. timing, the >3 was a "first thing" sample; the Nov one was about midday because that was when I was at the Hospital and I didn't want to have to go back....]

    As far as diet goes (eating disorder notwithstanding), I couldn't be any more

    "free" if I tried - already low-carb - low calorie - gluten-avoiding if not entirely free - almost dairy-free - vegetarian. In fact, pretty much "food-free" [lots of supplements though - ].

    Have woken up feeling sick to my stomach (partly "in my head" due to anxiety for this appointment...), so will probably cancel anyway.

    xx

  • No, Don't cancel. If he sees you at your worst, he might do something. The problem we often have is that we put on a brave face, and as doctors aren't very perspicacious, they take it that all is well, then! Job done!

    It's the low calorie bit that is your problem. Not saying you Don't have a thyroid problem, but if you Don't eat more, you're going to have all sorts of other problems, too. Suppléments are good, but they Don't supply the calories you need. Yes, that's right, you NEED calories to survive. Especially when you're hypo.

    I seem to remember we've had this conversation before, Not-so-dumb! But you're still not eating enough. Dear, dear, dear! What are we going to do with you? Force-feed you??? Seriously, though, you really must eat. Believe me, I do know how difficult it is, but... You say you're gluten-free (almost) does that help? If not, go back to eating it full-time and see if you feel worse. Same with dairy. No point in giving something up if it doesn't help, especially when you have problems with eating. Just eat something you enjoy and never mind what's supposed to be bad for you. Nothing is as bad for you as not eating!

    Take care, sweetie, look after yourself. Be kind to yourself. You deserve it. x

  • Hi GreyGoose :o)

    Yes - I knew you would remember (sorry, it must seem that I ignored your wonderful advice) - we have had this conversation before; I referred to it before posting again... I'm so sorry.

    I seem to have - without wanting to - given up eating altogether. I am so afraid of the reactions. I wish "force feeding" could be an option.

    So, the appointment did not go well. It was not the same Consultant, which didn't help matters. I am SO normal that I could be the next stage in evolution (i.e. no food necessary). The TSH is the answer to everything, the T3 - that I reluctantly gave to him - result is "normal" (there was a bit of a to-and-fro about normal not equalling optimal. And low ferritin and low MCV and MCH are NOT signs of anemia - NOR is breathlessness.

    The cholesterol that wasn't checked this time but was high last year would "come down if you lost weight".

    *sigh*

    Another three month wait for more humiliation, although he will write to GP to arrange lipid and glucose test and some kind of BP monitoring - although mine isn't high at 141/86 (OK then).

    As I mentioned average basal temperature of 35 deg C, he made the HCA take my temperature (she had to go to A&E for a thermometer as the first two didn't work), which was by that time 36 deg C. Oh the smirk on his face was painful.

    You know what, maybe I don't have a thyroid problem.

    :'(

    Thank you so much for your support, I do appreciate it, even though it seems I don't and I have become one of "those people" who come back time and again with the same problem.

    x

  • Well, my blood pressure is going up. I'd like the doctor to check his big book on anemia.

    Pull your lower eyelid down, how red is the lining of your eye? or is it pale?

    Does he respect the Mayo Clinic? This is what they say:

    Symptoms

    By Mayo Clinic Staff

    Anemia symptoms vary depending on the cause of your anemia but may include:

    Fatigue

    Weakness

    Pale skin

    A fast or irregular heartbeat

    Shortness of breath

    Chest pain

    Dizziness

    Cognitive problems

    Cold hands and feet

    Headache

    mayoclinic.org/diseases-con...

  • Don't worry, I'm not judging you! I know how ill you must be, and when you get that bad, it seems almost impossible to do anything about it, and truly impossible to recover.

    I'm so sorry your appointment went so badly. Of course your temps had gone up, it's the early morning that counts! Even so, your temperature was too low to be normal. And he should have known that. Another ignorant numpty, I'm afraid. Don't let him get your down. He's in the wrong, not you.

    But what reactions are you afraid of if you eat? What do you think is going to happen? That you're suddenly going to balloon up like a Michelin man? I very much doubt it! The opposite is true. If you_Don't eat, you can't convert your T4 - which you do have a little of - to T3. Conversion needs nutrients like iron, B12, and CALORIES! Do you know that anorexics damage their thyroids and end up hypo?

    Anyway, listen to Héloïse. She's giving you some very good advice there. Follow what she says and you'll see. xxx

  • LOL, Grey, I'm using your "big book" line.

  • Yes, I noticed that. lol Feel free! Just another 'goosism', as Sparerib said, I believe.

  • OK, keep goosisms comin!

  • DB, you aren't one of 'those people' you are a valued member who is struggling to regain her health and not getting the support required from medical professionals.

    I think your disordered eating is a problem and will be contributing massively to nutritional deficiencies including low iron. Food is necessary to fuel the body even if you aren't able to enjoy what you eat. Low ferritin, MCV and MCH are signs of anemia but if the anaemia is caused by dietary inadequacy, the diet needs to be addressed. Breathlessness can be due to anaemia but also to malnutrition.

    I don't know that malnutrition causes TSH to rise but TSH does fall after eating which is why members are sometimes advised to have a fasting TSH test.

    Your FT4 4.8 doesn't indicate a need for T3 to me, but as taking T3 sometimes increases appetitite, I don't see that a quarter of a tablet, 6.25mcg, would be harmful and may be beneficial. If you read some of the research that Helvella posts it would appear that T3 is being recommended for a variety of illnesses and conditions, but not thyroid!

    ps Just seen GG's post about anorexia causing hypothyroidism and it makes sense to me.

  • Thank you Clutter - I do feel as though I take more than I give and I hate myself for that.....:o/

    So useful to know the anemia may not be all in my mind.... There has to be something making me feel so bad, right? (Nope, not according to the guy I saw today).

    The eating thing has got worse and worse over the years and is obviously compounded by the weight gain and inability to exercise and even when I do, it doesn't help.... So I do see that it can be a vicious circle.

    I refused to be weighed today as that is a further trigger for me.... I know that t would be around the 85kg mark which, given how I eat and that I have tried to exercise - is so upsetting; and of course when they look at you sideways when you say "But I AM "eating Less and Moving More", thinking you are at the drive-thru five times a week. Oh - and of course, the almighty BMI - yep - THAT figure (ALONE, according to GP) got my breast reduction surgery refused. (Another - long - story.)

    Thank you so much. I really appreciate your help.

    xx

  • DB, bear in mind that some people are too shy to post, so your posts, and the responses they elicit, will probably be helping others.

    I'm sure you already know that starving will make your body hang on to fat in order for you to survive until food is plentiful.

  • I know your FT3 isn't terribly low but still it may not be high enough for you so this may still apply:

    Iron deficiency is shown to significantly reduce T4 to T3 conversion, increase reverse T3 levels, and block the thermogenic (metabolism boosting) properties of thyroid hormone (238-242). Thus, iron deficiency, as indicated by an iron saturation below 25 or a ferritin below 70, will result in diminished intracellular T3 levels. Additionally, T4 should not be considered adequate thyroid replacement if iron deficiency is present (238,239,241,242).

    Exercise

    It has been shown that women or men who perform more than moderate exercise, especially when associated with dieting, have reduced T4 to T3 conversion and increase reverse T3, counteracting many of the positive effects of exercise in women including weight loss (236,237). Consequently, T3 and reverse T3 levels should be evaluated in individuals who exercise and/or diet to better determine cellular thyroid levels, as TSH and T4 would not necessarily reflect tissue levels in such patients.

    nahypothyroidism.org/deiodi...

  • This all makes good sense to me (after reading a couple of times :o/) but leaves me wondering if I have done too much harm...?

    T3 would still help though, right?

    As well as eating a bit more and exercising (haha) less [for the moment], flying in the face of everything a GP would tell me to do.

    xx

  • Remember, your body always attempts to heal if given the right cir-

    cumstances. Robbing it of nutrition has held you back but you can reverse all that. At least you can try. Don't give up on this. Whatever mild exercise like walking is manageable for you and if you can find some sun, even better.

    I know you need convincing and that's all right, I am a logical person and always want facts to be backed up. It's the right thing to do .

  • Thank you so much Heloise, it is so wonderful to be believed and taken seriously.

    I think I have brainwashed myself about exercise and cannot let myself think that reducing it would help me..... Spent years working with horses so it was a way of life. I don't anymore so feel the need to make up for it somehow - and it has rather backfired I think :o/ because now I simply cannot and because I cannot (no energy, breath etc), I don't think I deserve to eat.

    (Ridiculous I know :oP)

    xx

  • That is quite an insight! I think you have just psychoanalyzed yourself:) Good sign. Now all we have to do is talk you into knowing how important your life is. I'm very serious. Remember "It's a Wonderful Life" when George goes back to a world WITHOUT him.

    This world wants you to believe your worthless so that give up your power. Don't do it without a fight!!!!!!!

  • I get very angry with myself for wasting and failing to appreciate my life, but there is a very "understandable" reason for feeling that it is of no value. I fight it - but generally fail (just given up on Group "Therapy" after, in the end, feeling10x worse), so even though I know my shortcomings, it can be overcome by what I have believed since I was old enough to believe that I should not exist.

    Too deep. Sorry. It is only in recent years I have come to understand this about myself - and yet I still am not winning the battle. But I do intend to make a good effort now.

    :o)

    xx

  • I get it. I also think that your condition has caused some of that thinking. I get a dark feeling sometimes and I know I'm low in hormone. That is why it is so devastating and even more reason why this medical system should overhaul their management of thyroid conditions and probably female conditions in general. I don't think they will but since we have a way to get around it, it works for me.

  • This paragraph is from the Thyroid Academy about leptin resistance. Look at the treatment they advise.

    In the International Journal of Obesity, Krotkiewski, et al. published the results of their investigation of the impact of supplemental T3 on cardiovascular risk in obese patients to partially reverse the reduced T4 to T3 conversion seen with obesity (53). Seventy obese patients with “normal” standard thyroid function tests were treated with 20 mcg of straight T3 for six weeks. While the dose was not high enough to completely reverse the reduced T4 to T3 conversion seen with obesity, there was a significant reduction in a number of cardiovascular risk factors, including cholesterol and markers for insulin resistance. There were no side-effects in any of the patients. The authors conclude, “T3 may be considered to ameliorate some of the risk factors associated with abdominal obesity, particularly in some subgroups of obese women with a relative resistance to thyroid hormones possibly dependent on decreased peripheral deiodination of thyroxine (T4) (53).

  • Hi Blonde, you might be iron deficient and adrenals are lowering your TSH output to accomodate the lack of iron. Along with low ferritin, you need supplements. Here is something to compare your tests: labtestsonline.org/understa...

    Do you still have T3? Don't be afraid to take a very low dose. I don't think it will interfere with the thyroid loop like the T4 does. I think it helps with dark thoughts and negativity.

  • Thank you so much for remembering me Heloise. I DO still have the T3 AND the Nutri-Adrenal Support..... I just worry that my (sometimes) already hard-working heart will give up....

    Does the Ferritin of 63 count as low?? (I certainly have, as I have already said, a lot of the signs - but that could also be attributed to hardly eating at all, I guess) Very interesting to know how this affects the thyroid output although am confused by you saying "lowering the TSH output" (?)...

    :o/

    x

  • I promise you your heart will LOVE T3. Of course, not to overdose and take it slow.

    STTM says ferritin should be 70 or 80 but the range for that was smaller than on yours. For other ranges, it should be over the half way mark which means at least 100. I do think you have low iron when tested. These are the tests they recommend but of course you may have to resort to prayer to get it. Look at serum iron, TIBC and saturation on this list. stopthethyroidmadness.com/l...

  • Thank you Heloise - I am SO difficult, I know it..... I seem unable to believe that I won't do more harm than good with T3 (as grey goose would agree :o/).

    But would it be OK with those T4 and T3 readings?

    I'm now going to read the STTM info...

    x

  • Yes, very OK. Your TSH needs to be brought lower and your T4 may possibly go lower but the T3 will be going to work for you so it won't matter. I do think you should have some adrenal support and should be taking iron. I'm not clear on the sachet that has been mentioned but you could ask others. I don't understand why the GPs won't even treat iron deficiency with those symptoms. So discouraging and they leave you feeling utterly hopeless and fearful. Are you taking any supplements right now? You could start 5 mcg. of T3 in the a.m. and some form of iron at bedtime with orange juice or vitamin C. Adrenals benefit from vitamin C so you could actually take several doses through the day. A sublingual B12 cannot possibly hurt you. I don't know if anything could go wrong but certainly not in the short term anyway.

    I know you feel it's a big step to go on your own with this..... and it is. But you are slowly shutting down your metabolism and that is more frightening. I don't think anyone has died from taking thyroid hormone. We've had many success stories lately from those who have resorted to self medicating, I wish you could read them all.

    I would add drinking licorice tea if you like it but if you feel it's too stimulating, stop it. That is for your adrenals.

    Think about it.

  • Thank you Heloise and Grey Goose and Clutter - such wonderful support and great information x

    (But yes, grey goose, I DO believe that I will blow up like the Michelin Man - well, what would be the next step, I already feel like the Michelin Woman :'(.....)

    I plan to take note of everything and put myself to work taking much better care of myself - starting with eating SOMETHING and taking the supplements alongside rather than instead of. I have so so so many issues with food - that are not reducing at all with the daily "this is bad for you oh no now it's good for you" stuff in the news and on the TV/internet. I am not usually so gullible. The advice you have given me is so welcome and I intend to do much better from now on as I cannot go on feeling like Death.

    I have just (now, this afternoon) had to give up the most recent module I was "studying" (ha ha) with the Open University as the battle for my mind and strength has overwhelmed me. I'm now "Restricted" status which means I have to appeal if I want to continue to study (which I DO), so I HAVE to pull myself together. But a really really supportive Advisor (I felt a little better from the support on here so was brave enough to make the call) was very understanding and will support my application to continue with another module but also told me that I should take better care of myself.

    I don't know how I sunk this low, I really don't :o/

    Thanks so much

    xx

  • I've just read all your post - I'm sure your experiences ring true with a lot of people - including me - and you have some great responses there.

    Thanks for the smile too - but I know what can be underlying a joke ((hugs)). don't lose that sense of humour - it gets us through! :D

    I too don't eat much, around 1000 cals yet am now 'Michelin woman' (& not the chef variety) - I told the GP I'd gone from pear to apple-shaped (btw 13st is not that heavy really) I've put nearly 6 stone on - 2 right after my thyroid op, 1 since quitting smoking - another since xmas on a low dose of levo - arghhhh! I used to be fit!

    Funny thing is when I eat breakfast & regular meals on holiday I lose weight (I can't face food first thing - a lot of us can't) I have more energy & the engine works! - You're probably hibernating, body's in 'limp mode' waiting for springtime & a supply of food!

    I have no advice, just sympathy sorry, if I knew the answer I'd do it! (however when I trialled NDT I kept weight steady but stopped to have a bloodtest --> diagnosis) J :D

  • Thank you SpareRib - I appreciate your words and understanding.

    The answer would seem to be to go on holiday more often! :o)

    I experienced that too on a trip to The Bahamas a few years ago (and indeed, my last holiday). I was a bit out of shape before I went (as in, about 10st+ *sigh*) - but the regular meals of a multiple choice breakfast feast, a packed up salad lunch with fruit (which we packed ourselves to take on the yacht ----- dolphin "watching" when we could find them, i.e. final day) ----- and a variety of nice dinners (with pudding) - no snacking! - and I came back in pretty good shape and with good hair (although not one good day whilst I was there....)!

    Very hard to recreate to at home, but it's a plan I would like to attempt.

    (The meals and gentle exercise of yoga and considered breathing, not the yacht, the humidity and the seasickness.)

    I do feel for you too - it's so hateful to suffer like thisand feel not only powerless to stop the rampant changes but that our very best efforts fail too. Time for a new approach I think.

    xx

  • Bahamas & sunshine - sounds lurvly/bliss .. but a cruise is a nightmare to us poor landlubbers! - can't do more than a 1½hr ferry to Calais - ill for days otherwise! Suppose it's better than Egypt - ill all blummin' week... some holiday then!

    My proper holiday is visiting my friend in Denmark - she used to live in England & returns the visit - we have an understanding...

    she spoils me & I spoil her - both rotten, thank goodness :)

    Breakfast - homemade Danish rolls (+ lurpak) & cured meats.

    Vs 'full English' (with GB Danish bacon - exported!)

    Lunch is smorrebrod (open sandwich - usually prawns on plaice, smoked salmon etc) - she wants fish & chips, or pie & mash lol!

    Dinner - something porky, with tinned asparagus.. weird... - she wants steak or gammon or lamb with everything etc - the real deal - the cuts of meat are different there & expensive. Or a Chinese or Indian meal - was a rare treat for Danes.

    They don't seem bothered about fruit & veg either - strange I thought - then again not much grows in winter up north! However their Boots (Matas) is heaving with vit D supplements.

    Conclusion - we should really head further south where the Sun is - but the northeners have sussed it - eat fish...

    or buy a spectrum UVB light £300

    What's your new approach?

    J :D xx

  • Your holiday exchange sounds wonderful! :o)

    It's so weird to think how very different diets of other Europeans might be; how lovely to be able to experience others so easily and casually. Hmm - Egypt - sounds good on paper :o/ Ill for a week - what a nightmare!

    The Bahamas trip may have sounded better than it was - not a cruise in the traditional sense apart from actually being on the sea (I don't like those enormous floating hotels, although maybe the swells aren't felt as much.....) :o) but once out there (about 10-15 miles I think), it seemed a long way back when feeling like **** :o[~~

    It was a very much holistic trip, primarily to "watch" (as I said, none were seen until the last day - :o/ ) wild spotted dolphins based out of Porgy Bay, Bimini. Very basic (and not cheap but not first class prices either but about half the cost was getting there, for some reason via Canada...) and when not on the yacht (big catamaran) just simple stuff like the tiny island market, another beach or yoga/!Quantum Light Breath/sharing circle (?) - type activities. Fair number of solo ladies when I went and varying sexual orientation...... We were not on the boat (or turned round) a couple of days because of the tail end of a hurricane causing massive swells, but even the lesser swells caused this landlubber to feel dreadful (got my sea-legs by the tail end of the trip though),

    Anyhow, I did come back in fairly good shape - so amazing after only 9 days (and some of those were in Ft Lauderdale at each end of the trip so even less on Bimini) and it is when I think of that time that I attempt to plan my new strategy - but without the - sun, yacht, catering, classes on the spot, friendly co-travellers and peace of mind that I had at that time *sigh*

    Sadly, one part of that involves (and I know grey goose will support this, if she reads....) eating some meat again after years of a strict vegetarian diet. Firstly, it will be (sustainable) fish and if I can do it, some free range chicken. But I do nevertheless plan to eat three meals a day, following the breakfast like a king, dinner like a pauper approach. I am also going to give myself T3 and possibly the adrenal support.

    I shall rein in the more vigorous exercise for now and start yoga and pilates, bounce on my rebounder every day and use my bike as transport rather than mammoth (haha) trips. That was rather curtailed last year after I took my bike in the car to go on a scenic ride and came back to find the car broken into with damage the insurance didn't want to cover and some items stolen., which meant that the radius of the distance i would travel shrank somewhat as I would not take the bike in the car to travel and explore further afield. I just have to make the most of what I can and try to beat the feelings of depression and anxiety that can overwhelm me......

    So far my thoughts of the day; here's hoping :)

    xx

  • Sorry I've just come back from a trip to the sea-side, snow on the welsh mountains, & dune walking is enough exercise for me! Feel better (but cold) :)

    Good luck with your plan, it must be difficult for you, I did read a statistic that 85% of vegetarians return to eating a little fish & meat, someone also said awhile back she looked at it as medicine.

    I have been having awful dread feelings, heart-sinks & agitation, insomnia with contant 'monkey chatter' in my head - I'm still on the starter dose of Levo, seeing GP Friday.

    All the best to you, Jane :D x

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