Fat, fed up and fifty with no improvement. A decade of despair

Hi this is my first post. I was diagnosed hypothyroid after the birth of my child almost 12 years ago after going to gp exhausted with a bag of hair that I'd collected - - a year after my child was born.

Apparently my results were off the scale when they got them back.

I was put on synthyroid T4 and after 4-5 years of getting bigger and bigger, freezing cold, depressed, with feet that had cuts and were always covered in hard skin despite constant visits to chiropodists m- I visited drs S and P.

I had become more and more unwell and was enormous. Despite eating like a sparrow. Felt like my legs were in irons. No energy and no life. Consulted Dr S (RIP) and Dr P - all to no avail. I would have continued with Dr S (used to come to Glasgow) but then he passed away! I only went to see Dr P once - couldn't afford to go to London again. He couldn't find my pulse!

I've tried armour to no avail - now I'm T3 (only) for past 5 years. (75 mcgms daily). However I feel if I swallowed an entire packet - it wouldn't make a jot of difference. My gp wants to add T4 but I had so much reverse T3 and it made me ill _ I don;t want to - I'd appreciate any thoughts on this.

I've seen various endos (specialising in diabetes) that just shrug and tell me they can do nothing for me. I simply have to live like this. I've no memory and simply have a scalding shower each morning to heat up. I work f/t.

My results constantly come back non-compliant - because nothing makes a difference.

No-one is giving me any hope. They just patronise and ignore me.

My last results Dec 2016 are as below

Can anyone help? My sisters (2) and mother all respond to synthyroid and are slim and well. I have a conversion problem - that's why I went on T3 but five years on nothing puts a dent in my symptoms - apart from hair loss much reduced.

I switched from T3 prescribed by Gp to greek stuff because I believe its more potent.

I take it x2 tabs (25 mcgms) frmorning with water - don't eat for hour and half.Another tab of 25 at 4pm.

I take magnesium, D3, folic acid, selenium and ashwaghanda. Nothing helps.

I'm just back from holiday where I had to wear the obligatory fat clothes to hide a stomach (an apron) that looks like I gave birth to triplets. The classic buddah tummy. There is no definition in my face. It's just round. Yet when my child was born I was slim!

I'm fed up and don't know what to do anymore. There is no expertise for people like me. I'm just offered anti depressants!

My results Dec 2016 are as below: I was tested for coeliac - negative result.

It also doesn't help that I don't understand my results. Hope someone can shed light on why no improvements on T3 only. Thankyou all in advance! Apoogies for such along post.

Thyroid Perox ABs > 2000.0 U/mL

Serum Ferritin 139 (15-200)

Sodium (133-149) 137

Potassium (3.5-5.3) 4.5

Urea (2.5-7.8) 5.7

Creatinine (40-130) 59

GFR (est'd) (>60))

TSH (0.35-5.00) 19.32

Free T4 (9.0 -21.00) < 5.0

Total T3 (0.9-2.5) 2.8

WBC 7

RBC 3.97

Haemoglobin 122

Haematocrit 0.382

MCV 96.2

MCH 30.7

Platelet count 254

Neutrophils 3.6

Lymphocytes 2.8

Monocytes 0.4

Bosonophiles 0.24

Basophils 0.1

65 Replies

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  • Have you looked at adult growth hormone deficiency?

  • I don't know anything about that. Can you explain please? thank you.

  • Rather than me trying to explain (because I don't think I'd do it very well!), I suggest googling it. I think it may be a factor in a number of thyroid/type problems that don't get sorted by t3/t4 but I've no evidence to support that. The test to prove AGHD is difficult and I'd be interested to hear if anyone in the forum has had a AGHD diagnosis and treatment and what their symptoms were.

  • Human Growth Hormone - HGH - is produced by the pituitary, and deficiency is fairly common in hypos, because you need good levels of T3 to make HGH, and good levels of HGH to convert T4 to T3.

    You can't test for HGH itself, because it varies too much, so they test IGF 1, because there is a close relationship - if the IGF 1 is low, the HGH will be, too.

    The treatment is daily HGH injections. But, it is horrendously expensive. Doctors rarely ever test for it, for that reason. I had mine done privately. However, I was only able to afford the treatment for a couple of years. Then, I retired and couldn't afford it anymore. However, I think my HGH level has improved with my T3 level. I think if someone is on T3 only, she is unlikely to have an HGH deficiency, unless she has a pituitary problem.

    Symptoms are a high level of fatigue and lack of energy. Muscles are reabsorbed and replaced by fat, so you get shrinkage of gums and lips, deep lines on the face, bingo wings under the arms, and a lot of tummy fat - oh, and the nose and cheeks start to droop, too! :)

  • Hi jennywren11, welcome to the forum.

    It's unfortunate that you got the TT3 tested, and not the FT3, because the TT3 gives you no useful information whatsoever. The FT4 and TSH are totally irrelevant when taking T3 only.

    Your ferritin is good, but have you had your vit D, vit B12 and folate tested? They all need to be optimal, too.

    The thing that stands out, of course, is your antibodies. Did you know you have Hashi's? With Hashi's, even if you do test negative for Coeliac - although the tests are notoriously unreliable - it does sometimes help to go gluten-free. Are you taking selenium? That can help lower antibodies, too.

    Have you ever tried taking your T3 all in one got? If not, that might very well be worth a try.

    But, what we really need to know is your FT3 level. If it's too high or too low, the it could be obstructing your efforts to lose weight.

  • Is your TSH that high 19.32 ? And your Free T4 only 5

    What is your Doctor doing about this?

    X

    🐥

  • The doctor may not even have noticed the high TSH or thinks it's in the normal range. It's ridiculous is it not.

  • nothing - they know less than me

  • Hi all / many thanks - now I'm worrying about growth hormone. Yes I'm taking selenium / looking at past results my TSH has been 11.22 and also 46.46 - what should it be? It's all meaningless to me / do fed up! I'll try T3 all at once / but to be honest if I swallowed entire packet doubt I'd feel better / my GPS are useless and as for endos **** last one had to students and drmyr home with no help / told to get on with it!

  • The aim of a TSH is 1 or lower :) If we want to recover our health there's a wealth of information that members' experience help us along a path to good health.

  • Thankyou

  • Don't worry about growth hormone! It should never have been mentioned. What you need to do is concentrate on your T3.

    Hormones are all inter-dependant, and when one is off kilter, the others are also bound to be. Get the T3 right, and the others will more or less take care of themselves.

    If the lab refuses to do the FT3 - are you in the UK? I thought you were probably in the US - then you will have to do it yourself. The labs are as ignorant as the doctors!

    Whatever you do, don't join slimming world! It's based on low/no-fat, and that is the worst thing you could possibly do, at the moment. The body needs fat, and the body needs cholesterol. Low cholesterol with mess up your hormones even more, because the adrenals need it to make hormones. You won't lose weight with a low FT3, anyway, and trying will just make things worse. Eat well and eat clean, and nourish your body.

    Doctors are unbearable when they have students, because they love to show off, and show the students how well they 'manage' their patients. Not how well they treat them, but how well they keep them in their place!

    I'm a bit lost in this thread, because there are so many responses, but has anyone mentioned your nutrients? Vit D, vit B12, folate and ferritin? These all need to be optimal for your body to be able to use the hormone you're giving it. Have they been tested? Are you supplementing anything? Oh, yes, I mentioned it! lol You didn't reply.

    Also, how do you take your hormone? On an empty stomach, leaving one hour before eating or drinking anything but water, etc? There are reasons for all these questions, we need to get a clear picture of what's going on before we can make any intelligent suggestions! :)

  • Hi greygoose, I'm in Scotland. Yes I take it alone with water 1 half hours before eating .Got scared about growth hormone.

    Then i worried about cushings too!

    But could it just be my T3 not working 'cos of hashi's?

    Anyhow i take magnesium, folic acid, vit D3, ashwaghanda.

    I took all my T3 together as suggested - last night and strangest thing / my feet warmed up! I wear 2 pairs of socks every day / also in bed.

    I have a scalding shower each day and keep plug in to heat feet.

    Going to do some tests and post / when it's discount Thursday.

    Many thanks

  • Half an hour before eating? I full hour would be better for absorption.

    How close to your T3 do you take the magnesium? For optimal absorption, you should take magnesium 6 hours away from T3. Vit D3 four hours away.

    I really don't think the T3 isn't working - that would be rather strange. I think it's an absorption problem. Either in the gut, or at a cellular level. Which is why I'm asking all these questions.

    For the moment, forget adrenals, forget pituitary, let's just concentrate on the absorption of T3. Do you eat any form of unfermented soy? Be careful how you answer that question, because it crops up in all sorts of unlikely places in the form of soy protein, soy flour, soy oil, etc. I don't know about Scotland, but in England, it's almost impossible to find any bread that doesn't contain soy flour. Do you consume soy sauce at all? If you buy processed foods of any kind, always read the labels.

    Were you tested for vit D before you started supplementing. If so, what was the result, and how much are you taking. What about vit B12, folate and ferritin? Have these been tested?

    Why are you taking ashwagandha? Do you feel it's doing you any good? It doesn't suit everybody. Some people do very badly on it.

    All these questions are important to get a complete picture.

  • Hi grey goose / it wasn't very clear I take t3 one and half hours with water before eating.

    I hope you're right that this can be fixed.

    I do eat bread / but will cut it out / will try gluten free and see how I get on.

    I am taking ashwaghanda in hope might help but no discernable difference.

    I'll do some tests privately as and post / many thanks.

    I think I have absorption problem! My twin sails thru life on levo as does mother and other sister. I'm just desperate to feel something like normal. Thank you

  • If you don't feel any benefit from the ashwagandha, stop taking it. See if you feel any difference then.

    Gluten-free has to be 100%, or it's of no use. And, as I said, gluten isn't just in bread, it crops up in all sorts of places, where you wouldn't expect it.

    But, you don't answer any of my questions. For example, how long between taking your T3, and taking your magnesium? These details are important. :)

  • Sorry i was taking t3 first thing in am - when I get up. Magnesiumat night bedtime. The rest selenium etc in a/noon. However it was suggested y'day I take all my t3 at once - in the night/ so I did that last night, yes I know gluten is everywhere/ that's why I've not tried it before but will give it a go thankyou

  • OK, so I presume that you didn't take your magnesium last night. It really is important to take it well away from thyroid hormone - I would say, six hours. :)

  • Ok thank you

  • :)

  • Hi greygoose. If there is an issue with the adrenals couldn't this be having impact on the uptake of the t3? I believe from seeing Dr P, that that was an issue for me, and his advice worked for me - once adrenals improved so did lot of other things... just took a bit of time adjusting dose balances. Same thing happening with me now - adrenals settling down - feel t3 starting to work better again.

  • You mean uptake by the cells? Problem is, we don't even know the OP's FT3 level. It could be an absorption problem in the gut - might not even be reaching the cells. In fact, the only result we have is the FT4, and that's of absolutely no use to anyone.

  • I see what you mean greygoose , it was more a case of me asking if this could be a possibility. I don't think I'll ever fully understand how all this impacts one way or another, I do find it so confusing. What would cause an absorption problem in the gut - would that be candida or such or something else?

  • Could be all sorts of things. Could be Coeliac, leaky gut, or low acid in the stomach.

    Yes, I realise why you suggested that, but the think is, you have to take these things one step at a time. If you go jumping around - could it be this, could it be that? It all gets so confusing, and we end up not knowing where we are. First of all, we need to know all the levels, and find out if it's an absorption problem.

    It's like if you have a problem with your computer, and call customer services. First thing they'll ask you is : is it plugged in? Which isn't as daft as it sounds - it often isn't plugged in! Always start with the most obvious when trouble shooting. :)

  • Ah yes, see where you are coming from. And I do tend to jump around...but only in my head! (Ha ha) A sensible approach. I have heard the computer analogy before, not quite as politely as you put it. I do appreciate your responses. cheers.

  • You're welcome. :)

  • Dear all I've ordered discounted thyroid 11 blue horizon test (thanks seaside Susie). So will have some results to post soon. Thanks everyonefor all the help and advice x

  • That's good. :)

  • Two students that should read and sent me home with no help! I've no FT3 result / I think labs refuse to do it.

  • They rarely do a FT3 or FT4 at times. You can get a private one from our recommended labs if you want. We have a few labs and it's home tests.

  • Surely they should be doing it if you are taking t3 only?

    I'd go back to GP and tell them it needs doing - I've had blood done and lab have returned it before without T3 levels, had to get GP to put special request through. Someone, on here did say that it is illegal for Dr's to take blood and not do tests, if you are having blood taken for those particular tests. Make you/gp clear what they are taking blood for.

  • You could have something called Thyroid Hormone Resistance which doctors are unaware of which means you have to have higher dose of T3. I shall give you a link.

    The fact you are taking 75mcg of T3 only and have such a high TSH makes me think resistance. I doubt any doctor in the UK knows about thyroid hormone resistance.

    Re feeling cold, I've just done a post about Virgin Coconut Oil (it is very hard when you see it in the bottle but melts easily) which may be helpful.

    First though is to get your TSH lowered. I've always taken my doses of hormones once daily. When T3 gets into our cells, it's effect lasts between 1 to 3 days. However if resistant you need larger doses. The doctor whose links I am going to give took 150mcg daily (in the middle of the night so nothing interfered with its uptake).

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

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

    web.archive.org/web/2010112...

    naturalnews.com/036554_extr...

  • Many thanks / yes I've read about Dr Lowe / I'll try that then

  • Hi shaws. We are told to take our t3, in split doses? Are you taking t3 only? And if 20mcg t3 = 60 mcg of t4 (have I got those figures right?) isn't 75mcg quite a high dose =210mcg t4?

    I really should understand more of this than I do!

    Is this 'resistance' where the system cannot use the meds? And doesn't low adrenal function impact on this uptake? Or am I getting this all confused?

  • I do not split my T3 doses. I take just under 50mcg. Everyone is different of course. I take my dose when I get up with one full glass of water and wait about an hour before eating and I have no symptoms. I have a life and my day isn't taken up with i.e. empty stomach, remembering when it's due etc etc.

    I follow Dr Lowe's procedure, one daily dose. The reason being, that T3 has to enter and saturate the T3 receptor cells, then its work begins which lasts between one to three days.

    Amount of dose is immaterial if you feel well. That's the trick - to feel well.

  • I should also state that Dr Lowe only took one blood test before he diagnosed/treated patients. Thereafter it was all about how the patient felt on a particular dose. He'd never prescribe levo only NDT or T3 only for his resistant patients.

    Before blood tests were introduced along with levothyroxine, we were diagnosed upon clinical symptoms alone and given a trial orf NDT. Doses were between 200 and 400mcg.

  • shaws Thank you for that. I must admit I often, because i would all too often forget, take my t3 - currently 50mcg, first thing in morning rather than splitting, but was thinking maybe I needed to split it. Maybe better to not then.

    Was on 60, dropped by gp last year, doubt they will consider increasing it again! I currently building it back up to 50...spent a couple of months trying to clear down and start again - as adrenals struggling - So 200 -400 of t3 is not something GP's are going to consider? I think 225/250 was most of T4 they would issue.

    I would appreciate it if you can help advise/suggest as to the best 'order' and time lapses when taking the following -

    50 mcg t3

    nutri-adrenal

    nutri thyroid

    Vit c

    Vit b12

    Vit d3

    Co q10

    Please. Would be much appreciated.

  • I'd take (and I am not medically qualified) my T3 first thing with one glass of water on an empty stomach and wait one hour before eating.

    I'd take anything else at lunchtime with meal as I think most have to be taken with food.

  • shaws You may not be medically qualified but you do seem to have a much better handle on all this than I do, so - Many thanks. I will try that and see how I get on. And hopefully I can manage to remember to take the others at lunchtime. Much appreciated.

  • I'll try the rest with food then thank you

  • If you work or even if you don't get a pillbox (£ shop)and put all your lunchtime tablets in it and put in handbag. you can also set an alarm on mobile if you have one.

    Also, keep and eye on your pulse/temp and if either get a little high/fast you can reduce dose slightly next day.

  • Re shrinkage of gums / had 3 dental implants 'cos teeth now compromised / more expense!

  • Imho get private test done, save up if necessary and get blue horizon thyroid 10 or 11 or medichecks equivalent and post results on here and get advice from people who do listen do understand and know what they're talking about. No ft3 done when on t3 only? TSH 19.32 ? Crikey love time to take control. Read, learn, ask questions... Thyroid uk website great place to start too. I'll put link to the private test page on TUK site. thyroiduk.org.uk/tuk/testin...

    Hugs linda

  • Thanks - just getting through each day really / I've a child and partner and F/T job!

    I've sort of just carried on because nothing else for it / my life blighted by this/ whatever I try / and no knowledge from endos or GPS - so feel stuck! Will do private tests ! And post back thanks

  • I have found when it comes to doctors and thyroid glands , you got to know when to hold em , know when to fold em , know when to walk away , and know when to run. They're a bit of a gamble Keep on running , keep on running ....

  • Sending a big hug firstly as you sound so down.

    I see you've had great advice the growth hormone and other results do I won't re iterate.

    Re weight. You need to be gluten and ideally casein (in milk) free. Both look like the thyroid to the body so when you eat and they get into the bloodstream the T cells are sent to attack invaders but then attack thyroid too. So I heard from some Professor but can't remember who annoyingly!

    Research leaky gut, Chris Kresser website.

    Dr Datis Khazzarian books on Hashimotos are brilliant.

    Over 80% of immune system is in the gut so all about healing the gut in my humble opinion.

    Good probiotic

    Loads of Tumeric (with black pepper for absorption) cinnamon as anti inflammatory.

    Get B12,Vit D, Folate and Ferritin optimal.

    Paleomom.com has good advice on food.

    Susan Blum The Auto Immune Recovery Plan is good too.

  • Thank you

  • Hi jennywrenn11

    I thought I was the only person who said "fat,fed up and fifty" !!!!!

    I also did the bag of hair to the gp too. I was so so scared of touching my hair. My endo said she had no idea why my hair was falling out!! I wanted to shout at her and say your RAI treatment did this to me but out of respect and she's a consultant, I didn't !!!

    Three nearly four stone heavier and she suggested I go to Slimming World! I said I had put myself and my family on a healthy eating plan for three months. The family lost weight and I gained it. She then left the weight subject alone.

    I don't understand the in's and out's of the T3 and such but the support I have found on this forum has amazed me. It's given me the ability to stand up for myself and argue back. It's given my more confidence to say to myself and others, that yes I'm bigger than I should be, yes I'm fat but it's a medical issue and I'm doing my best to control and fight it.

    Please read through the forum and take comfort from all the wonderful people here

    Please remember, you are not alone x

  • Thank you

  • Hi empathy, my whole sysyems are a mess with 8 years of mismanagent of my post thyroid cancer meds. When u describe your tummy and round face it is symptoms of something I have been checked for! Google Cushings Syndrome. My symptoms were the belly and a hump on my back betweem shoulder bladed. The reason I mention this is my very good Endo reasurred me he thought my body was only mimicking Cushings due to prolonged severe stress but that I did not look like I had Cushings cos I didnt have a"moon" face

    Hope this helps u get to the bottom of this

  • Omg thankyou

  • you could do a 4x a day saliva cortisol test bec it causes hair loss and weight gain and messes with thyroid meds, sugar, cholesterol etc...I was shocked when mine came back weird....so if you cant afford to test,....my dr told me to sleep 8-10 hours a day, stop stressing over everything and pick my battles and let most stuff just roll off my back because worry never fixed anything, to stop being a super woman and let other do things, take lots of vitamin c ,b12 and b complex and fish oil and learn to relax and let go......Ironically, that was a job at first but I am getting more used to it and learning to say no to people....they are also herbs like holy basil that help and ashwangha..

  • Yes and Amen!

  • I'm going to do a thyroid panel - and will post. Can't afford every test tho' thank you

  • jennywren11 Just a little heads up for you -

    Blue Horizon have an Easter offer 20% off all tests over Easter weekend - code easter20

    All the thyroid tests are listed here:

    bluehorizonmedicals.co.uk/e...

    And the code is mentioned at the top of the page

  • Oh thank you !

  • Your antibodies are sky high -Hashimotos

    Very many of us find strictly gluten free really helps. See The Thyroid Pharmacist website on how & why

    Soya is also best avoided (including soya lecithin)

  • Yes let's hope thank you

  • Hi I recomend a Book called The Autoimmune Solution by Amy Myers, M D.

    I am not a doctor but I have hasimoto and removing gluten was the key for me.

    As per this Book, a gluten free diet can make the difference and with me and my son has worked. I feel good again, I am not tired, My memory has improved, I have lost the extra weight gained, ....

    Take a look. Hope it works for you

    Cheers

    C

  • Thank you

  • You can find the Book online. It is worth it Jen, I know how you feel because I have been there.

  • Many thanks

  • Have you done an adrenal stress test?

  • More than likely you have parasites!! I fully believe everyone that has thyroid issues have parasites and don't know it. I recommend doing a parasite cleanse ASAP! Then a follow up with food grade diatomaceous earth for at least 3 months after along with activated charcoal, your system is loaded down with toxins and these will help you take the load off of your liver.

    They compromise your whole system. Take away your nutrients and clog your liver. The LIVER IS THE REAL ISSUE! The liver is clogged so it can't help nourish your thyroid.

    Work on a parasite cleanse and do things that help your liver out. (Herbs, milk thistle, liver cleanses but not before a parasite cleanse )

    Hair falling out is because your body is not receiving nutrients and your body is smart and it's letting go of anything it can to help save and nourish your organs first and to save your life.

    I pray this helps you.

  • I don't know anything about parasite cleansing etc - will look into this thank you

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