Hello, I am Edysia and I have a question. Does my GP want me to die?

I sometimes feel that he does, I have suspected (known) for quite a while now that I have a Thyroid problem, I am a qualified (non-practicing) nurse and with the knowledge I have gained through my studies and life experience I know that there is something very wrong with the way people are treated in this country.

I came to the UK in 2006 and I have been to my GP many times for help and frankly I have never received any. After losing my parents I suffered greatly from depression which was the first thing i wasn't helped with, I was refused talking therapy (I was told that I am too distressed!) and had damaging anti-depressants and tranquilizers offered as the only course of action. The lack of help caused me to lose my job.

I decided to try to start another degree study to improve my self esteem and my career prospects. Around eight months ago i suffered from a bout of food poisoning which left me with all sorts of problems that were more or less ignored by my GP (eight months on I still have not had any kind of proper diagnosis) I had terrible constant pain in my upper right abdomen which I suspected was a Gall Bladder or Duodenum issue but of course my problems were all gathered under one umbrella diagnosis...IBS.

I can't study, I can't work, I basically can't have a life. All I do is sit locked in my flat for ages, isolated from the entire world. I can't eat normal food, I am on very strict diet but it does not help. Having pains in my stomach, weak immune system, never can shake off cold or flu.... My anxiety is going through the roof, I constantly feel like I am going to die... it is all just awful.

My GP was always very reluctant to grant me any kind of tests i requested but she was especially reluctant to test for Thyroid problems. I finally had them tested last week (bargain basement TSH and T4, gold standard apparently) and while my free T4 has come back within range my TSH is at 13. Of course i was immediately given Levothyroxine (50mcg)

HOW CAN IT BE SAFE TO TAKE LEVOTHYROXINE JUST LIKE THAT? BASED ON SUCH A BASIC TEST. I have read about bad experiences of people on levothyroxine which makes me even more reluctant to take it.

I suspect I have Iodine deficiency but it has not and I suspect will not be considered, never mind tested. There could be any number of causes, apparently I don't have antibodies against my Thyroid, I didn't give birth so it is not post-partum so I am unsure of the cause. The fact that they won't help me to eliminate the possible causes is what scares me the most.

I probably suffer from Polycystic Ovary Syndrome as my sex hormone binding globulin is very low ( 15) - bottom range is 40 for pre-menopausal women, which possibly could contribute to my overall bad health.

I JUST WISH I COULD SEE A GOOD DOCTOR ( ENDOCRINOLOGIST) THAT COULD HELP ME. It is very hard to find one.

27 Replies

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  • The uk is indeed iodine deficient. btf-thyroid.org/index.php/t...

    May be worth you buying some and seeing if it helps? I buy it here

    bobbyshealthyshop.co.uk/

    G x

  • Thank you for your help Galathea, I'm still a little wary as I don't know for sure if I am deficient and if I am by how much? Bobby's looks good and i'm sure I will shop there soon!

    Thanks again

    Edysia

  • Look up " Great Taste No Pain" on www.

    This lady has help my digestive problems tremendously.

  • Thanks so much for mentioning bobbyshealthyshop.co.uk/.

    I clicked on it as had not come across it.......got totally engrossed in the u-tube story of Bobby and his cancer cure. What an amazing journey, and what an inspirational charirty that now helps other children with this cancer condition have all the integrated/holistic guidance and practical/product help that Bobby had.....so heartwarmed and humbled I donated to their charity.

    thanks agin

    JLTsirius

  • Did your GP do a thyroid antibody test to see if your thyroid deficiency has an autoimmune cause? If not, do ask for this to be done before you jump too far down the iodine deficiency road. If the cause proves to be autoimmune, iodine supplementation may not be advisable.

  • Here's an excerpt from Mary Shomon's site about iodine and autoimmune thyroid disease:

    But for some people, iodine or iodine-containing products make worsen autoimmune thyroid problems, both Hashimoto's and Graves' disease, and cause enlargement of the thyroid (goiter). Before you start iodine, consider having urinary iodine measured to see if you have an actual deficiency, and pay close attention to any symptoms that develop after you start to take iodine.

    thyroid.about.com/od/thyroi...

  • Sorry, just re-read your post and see that you've said you don't have antibodies. So, iodine deficiency is obviously worth investigating, but the NHS don't investigate the cause other than antibody testing. It is entirely possible that you simply have an 'idiopathic' thyroid problem. Supplementing with thyroid hormone (levothyroxine) may be just what you need to get your life back on track. It really does work for lots of people.

  • Thank you so much RedApple :)

    Do you know by any chance where/how I can test myself for iodine deficiency ? ( I suspected that NHS do not do tests for this).

    I am taking ( last 2 weeks) iodine supplements ( 200 - 400mcg- Immunace) as my diet since my food poisoning ( 8 months ago) is very depleted.

  • I really would advise against this plan of action, Edysia, because the amount you are taking (is that per day???) is very high. And even if you don't have autoimmune hypo now, excess iodine can cause you to have it. I know, I've been down that road myself - thanks to a cretin of a so-called doctor! - and I wouldn't wish it on anybody!!!

    In your whole life you only need about a teaspoon of iodine - it is, after all, a trace element - and it is recycled in the body. So even if you were deficient, you probably aren't now.

    I wholeheartedly agree with you about doctors' seeming indifference to their patients' health, but it isn't just in the UK that you find that. It's not much better here in France. Ignorance is rife. Especially where the thyroid is concerned. That's why groups like this exist...

    Lots of luck, Grey

  • Thank you greygoose.

    I do suspect iodine deficiency only because for the last 8 months my diet consist of rice, boiled chicken breasts, bananas, potatoes, gluten free bread with cheese and carrots. I cannot tolerate anything else. There is no great amount of iodine in this foods apart from cheese maybe?? I did not use iodized salt either.

    My antibodies TPO Ab are <20, which is apparently ''negative result''

    I am still puzzled about what to do with iodine supplementation. I probably wont be sure what to do until I see a good doctor ( I am losing my hope that I will manage to find and see one)

    Thank you for your supportive words.

    Wish you all the best too :)

    E.

  • An Iodine test is available from Blue Horizon. You can get a discount on some of the private tests offered by this company (including the iodine test), through Thyroid UK. Here's the link thyroiduk.org.uk/tuk/testin...

  • Thank You Red Apple. I have checked the link and found Blue Horizon and Genova Diagnostics.

    It is the matter of getting money for tests now.

    I have managed to ''force'' my GP to do TSH, T4, and TBO Ab only ( in respect to thyroid), they do not want to do T3 or Tg Ab, not to mention iodine deficiency test or adrenal gland function tests.

    I had female hormone profile done ( well sort of, not in full, but I have found that my Sex Hormone Binding Globulin is alarmingly low - 15. It points toward PCOS which goes hand in hand with hypothyroidism.

    I am all weak and tired. I cannot fight with these people. I am on my own with all these..

    Thank you for support and care.

    E.

  • Edysia, I know just how you feel. It is so very hard to have to fight such a battle when you have an illness that literally saps away the very essence of who you are.

    Many of us here know how alone you feel, and have travelled a similar road. Just know that we are at least here on the end of a keyboard for your support. :)

  • Quite a number of NHS labs can perform iodine tests (urinary iodine). But although I have asked several times, no-one here has ever replied that they have had that test. I think that doctors are unwilling to request it.

    The official USA RDA for iodine is around 150 mcg. My guess is that most people get most of their required iodine in their normal diets. Any supplementation is only needed to make up for the shortfall between their dietary intake and what they need. So taking a dose that is greater than the requirement by a substantial margin seems like over-kill. Excess iodine can be a bad thing.

    I am well aware that iodine is a controversial subject with some saying you should be taking lots and lots,and others being very cautious. My own view is that if you do not know where you are, by being tested, then caution is appropriate.

  • I've just had a look at the ingredients of the tablets you've mentioned and see that l-carnitine is listed in both versions. L-carnitine is said to inhibit the action of thyroid hormone, so, although the amount is seemingly quite small, it is possible that you could be making things worse for yourself if you are taking these supplements.

    Here's a link to some info about the use of l-carnitine for treating the symptoms of hypERthyroidism:

    en.wikipedia.org/wiki/Carni...

  • Thank you once again RedApple. You are so lovely and helpful.

    I did not know about thyroid hormone inhibiting properties of L-carnitine.

    Immunace contain 30mg of this per tablet, and sometimes I take two tablets per day. Knowing the potential risk I am going to stop this supplement now. I need to find Multivitamin which does not contain l-carnitine.

    E.

  • You sound as if you have untreated hypothyroidism to me. It affects your entire body, including your reproductive system and makes you depressed, plus loads of other symptoms. Your brain is signalling to your thyroid to produce more hormone, indicated by your elevated TSH. Your levels of T4 don't necessarily relate to how much T3, the active hormone, is in your body. According to the blood test I have enough T4 and T3 in my blood, but the urine test, which you can get from Thyroid UK, says I am only producing just enough T4 and not enough T3. 50mcg levothyroxine isn't very much. Does it make any difference? It seems to work well for some people and not for others. I suggest you read Dr Peatfield's book Your Thyroid and How to Keep it Healthy, which explains all about problems with thyroid hormone and how they affect your body, plus the deficiencies that are likely to arise, and the treatment options. It's easy to read. You might need to take NDT (natural desiccated thyroid) or T3 only if you don't get on with synthetic T4. If you want to see an endocrinologist then insist that you see one.. It is your right. But be aware that many endocrinologists do not know very much about thyroid problems either, they are specialists in diabetes. Doctors on the whole are pretty ignorant. Thyroid UK has a lot of information and so does Thyroid Patient Advocacy (TPA).

  • Hi Chillyfeet.

    I agree, I see myself as having sub clinical hypothyroidism. My TSH >13, T4 -12 ( normal range). TPO Ag - <20 ( negative)

    I do not know my T3 and Tb Ag levels (they wouldn't test me for it)

    I want to do more test but i have no money for private tests at the moment. I have heard a lot of good things about dr Peatfield also dr Skinner. I will get a book when I can.

    I was already refused referral to endocrinologist. I am scared. I am in a very vulnerable place.

    Of course I do know that my GP is wrong about a lot of things and having a knowledge that I am ill and not getting any help is very draining.

    I did not start l-thyroxine yet, I do not want to go by GP's advice. I think natural hormones are better than synthetic ones. I do not want to mess my body up even more than it is now. I am already very unwell.

    I really do not know what is going to happen with me..

    Thank you for your lovely words

    Best wishes

    E

  • Hi Edysia - welcome to the site :) I was wondering if you had both lots of antibodies tested for hypothryoidism? Most people are tested for TPO but not for Tg ab and really you need both to be tested to be sure that your hypothryoidism isn't autoimmune.

    Also I was wondering if you have the result of your FT4 test and the range to hand - if so please could you post them on here? I suspect that your FT4, although in range, may be very low in range and not optimal for you. I read a paper on sub-clinical hypothyroidism which I found very interesting - here is a link (in case you are interested in reading about it):

    thyroiduk.healthunlocked.co...

    I was diagnosed with hypothyroidism 18 months ago with a TSH of 15.0 and FT3 and FT4 just in range. I eventually had both lots of antibodies tested and they came back negative - so my hypothryoidism doesn't seem to be autoimmune either (although my endo said that it still could be as about 5% of people without detetable antibodies still have autoimmune hypothyroidism.

    Your symptoms all sound as though they could be thyorid related to me. I think that you shoudl give the thyroxine a go, as RedApple said most people find it very helpful. Just to let you know though that it made me feel worse to start with before I gradually began to feel better.

    I would be wary about supplementing with iodine. In the summer I had a deep wound that was cleaned, packed and dressed with iodine and it made my hypo symptoms much worse. This may have been a coincidence of timing but I don't believe so.

    Clare xx

  • Hi Clare

    Thank you for reply.

    My TSH >13, T4 -12 ( normal range). TPO Ag - <20 ( negative)

    I do not know my T3 and Tb Ag levels (they wouldn't test me for it). My results points toward sub clinical hypothyroidism.

    I am all undecided and I am still thinking what to do about l-thyroxine.

    I am just scared, and more than cautious. If I react badly to this medication than I know I wont get immediate help. I do live on my own, I have no family, GP's are ignorant, often hostile. My local hospital A&E terrifies me. I was there 4 times within last 3 months and they always send me home with co-codamol and paracetamol.... it is a long and sad story....

    thank you for your lovely words of support and encouragement.

    Wish you all the best

    E xxx

  • Hi Edysia

    All of the above comments are very good and that is what this support group is all about - supporting people who have difficulty getting well. It doesn't matter that you are unable to get out and about at present and many doctors don't understand how ill we feel. I myself had difficulty getting a diagnosis despite seeing about ten different specialists - all very wrong. It was a first aider who finally pointed me in the right direction when my TSH was 100.

    Thankfully I am now well again but it has taken some time to sort out my meds.

    A majority of people on levothyroxine do very well indeed but that is why they do not have to look at support sites such as ours - for them life is very normal and healthy. So, you may find that levo suits you too and you must give it a chance. A trial of levothyroxine is harmless.

    The feeling of dying is not uncommon if you feel desperately ill but theoretically once medication is given you gradually begin to pick up.

  • Hi Shaws

    I do agree. Places like this forum are very valuable and I must admit that I have joined only yesterday and I have already received a lot of responses and very warm welcome. I am grateful for that.

    I am glad that you are feeling better now.

    Best wishes

    E.

  • Starting on 50 mcg Levothyroxine when your TSH is 13 sounds very sensible to me, I would certainly give it a go. Re-test aftr 6-8 weeks then see if you need an increase to 75 or 100 mcg.

    koala

  • hakalalabs.com/Research/Abr...

    Read more about iodine

  • I agree with koala - with the results you've mentioned, I think it would be very sensible indeed to try the thyroxine and see how you feel on it. I can remember when I first started on thyroxine and started feeling better within days.

    It's not going to do you any harm if you try it and then decide to stop. You could even try it gradually - for example, take 50mcg tablet one day, then leave it a couple of days before taking another, seeing how you feel before you start taking it every other day, then every day. Or you could buy a pill cutter, and start yourself on just 25mcg per day, and gradually build up if you find it suits you.

    I can understand your being wary and cautious - but it may well work for you and make you feel better. Thyroxine does not suit some people, but it DOES suit plenty of others. I remember when I started taking it, I felt alive for the first time in ages.

  • I would definitely try the thyroxine. Start on 25mcg a day if you are nervous. It might make you feel a bit weird at first, but it could well make you feel better. It is normal to feel very afraid. You feel on your own and misunderstood and the medical profession don't seem to be there to help you. In the meantime, read Dr P's book. You need to understand what is happening to you. If the thyroxine doesn't help or you have deficiencies that mean you can't convert or absorb it very well, you will know what to do if you are more informed. Good luck. As ajw59 says, thyroxine does suit plenty of people. Even if it doesn't alleviate all your symptoms and you need the natural hormone, it could help you feel a whole lot better and more equal to the battle for whatever is optimum treatment in your case.

  • Hiya Edysia,

    I empathise with your plight to be understood, even heard, by your G.P. Levothyroxine does work for some people and 50mcg may just give you that little amount of energy you need to search for alternatives. Also, your food allergies may improve a little. I personally find the GAPS diet quite good. If it does turn out to be autoimmune, your gut needs to be healed and this diet helps with that. I'm in the process of doing it...{and stay aware that staying on the same low dose, can worsen your symptoms again, if it's Hashi's. (This book is great: Stop The Thyroid Madness).} All the best!! Chin up.

    Purr Jones

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