Don't know where to turn

Ia saw Endo in January, who started a trial of Levo 50mcg & ordered the tests that had been recommended here (folate B12 vit D etc) I left with a blood test form (for March) and an appointment for follow up in May.

I had the March blood test then got a note in the post from my GP saying that he had heard from the Endo & wanted me to call to discuss the results

Yesterday I spoke with the GP who felt all results were 'fine' except vitamin D. He said I would need to buy these from Boots or Holland & Barrett since he could not prescribe VitD without calcium. He declined to tell me the figures & ranges & reiterated that they were 'fine' within normal range.

When I told him my hypo symptoms were not improving & suggested that perhaps an increase in Levo may help, he's aid that my March test result was 'right in the middle of the range' and so no increase was necessary. When i politely protested that my symptoms were preventing me from functioning, he suggested that I discuss it with the Endo.

I don't know if I can hold on until May to see the Endo. They won't bring the appointment forward since her clinics are full & they are 'so busy'. And I have received two letters pushing back the May appointment to different dates & times in May; topped off with a letter received yesterday telling me my May appointment has been cancelled & that they will be in touch soon with a re-scheduled appointment. I was in tears to receive this and feel isolated, alone and helpless. Even my family is not at all understanding, sigh.

I was hesitant to post because I saw a lady who had written a blog criticising folk here for 'ranting' and moaning; that made me so sad because, after suffering in silence alone and depspairing, I had huge hopes that I had finally found a lovely community of people who 'got it' who listened & offered support.

I hope very much that one day I will feel well & strong enough to offer others the strength & support they need,; to pay it forward in gratitude of the support others have offered here.

That is about as much 'positivity' I can muster right now, sorry.

11 Replies

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  • My dear Hlinbaker (hope I got that right, my eyes aren't too good these days!), please don't take any notice of one looney who is probably a troll anyway! Did you read the responses? Very few people agreed with her. Say what you like - the majority of us don't mind - get it off your chest and you'll feel better.

    I wish I could help you with your problem, it was so unkind of them to cancel your appt. like that, so uncaring. But, of course, they don't 'get it'. They don't realise how distressing that could be for someone that is suffering. Or if they do, they don't care! However, I don't know what you can do about it. Your GP is obviously the usual ignorant, uncaring, jobsworth. Is it possible to see another GP?

    50 mcg is such a tiny dose - just a starter dose - and in an ideal world would have been increased six weeks later. However, I'm sure it will get increased when you finally manage to see your endo. No possibility of changing endos?

    Don't worry, you have found a lovely caring community here, and we understand what you're going through. Keep us up to date on your progress. I hope you get some relief very soon.

    Much hugs, Grey

  • Hlinbaker, an important thing you must know is that you have an absolute right to be given a copy of your results when you ask.

    When you get those copies post all the results on here remembering to give the ranges also please as they differ.

    Just completely ignore the frankly very silly writings of whoever it was who put you off using this forum and have a good laugh at greygoose's description of the poster. You have come to a very caring group here who only want to help others who are struggling to be healthy.

    Meantime, if you have not done so already please go the main Thyroid UK site at:

    thyroiduk.org

    and you will find a lot of information there, about all sorts of thyroid related matters.

    Knowledge is power.

  • I'm glad you didn't let that post put you off. Despite some of the desperate things I've written here, I'm quite polite and restrained day to day! But I have come here to express my feelings of sadness and desperation when I feel like no one will help me (and when I don't want to be carried out of the gp's surgery by the police!). When something makes you feel, as you say, like you don't know where to turn, this is often a place you can turn!

    Right in the middle of the range is not a good place to be if you're still unwell. I got some good results from bringing Dr Toft's book into my surgery and although I had to see most? all? the gps in the surgery, I finally found one who knew that some people don't feel well until their TSH is under 1.

    Also, can you get your endo's email address from their secretary? Maybe you could send your results and say how unwell you feel.

    You have all my sympathy. This will pass but for now it is an awful feeling.

  • I really, really would not wish that thread to have stopped you posting whatever you wish or need. (And it has now been deleted.)

  • Hi hlinbaker - so sorry to hear how you are feeling. I didn't see the post you are referring to, but am glad it has gone. I have posted many moans on here myself when I was feeling ill - please, please don't be put off posting - this really is the most caring community imaginable.

    Please do get hold of your actual test results and post them on here - as has been said above - mid-range wouldn't be right for most people. I am feeling well now that my TSH is < 0.02. Hugs (())) Clare xxx

  • Hey Hlinbaker

    I hope that you will continue posting. I was away from the forum for a while due to bad news in regards to my health, so I have missed the blog you are mentioning.

    I am in a very vulnerable place myself and I do understand how it is too have nowhere to turn for advice and I do know how it is too be scared, overwhelmed and lonely.

    It is good to make an attempt to share what's bothering you.

    There are wonderful people here, and while some people do not have capacity for empathy and some responses may feel harsh, you need to remember that not everyone is like that. I have received lots and lots warm and encouraging comments to my previous blogs.

    It happens that I come across harsh, patronizing comments but they are not common. It is very hard but I try to ignore them. That's the best way to go.

    I am very sorry that you need to wait until May for you next appt. It is frustrating. Try to phone them and ask if there are any cancellations. In the meantime just take your levothyroxine and vit D. It is hard to be left like that but I am sure you will find some strength to manage.

    Wishing you all the best.

    E xx

  • If you cursor to the question dated April 22, 2007 you will see an answer which may help you understand what is happening to you due to your meds not being increased.

    You will have to read and learn as much as possible as you will then be able to understand and maybe recover your health.Phone the Endo's secretary and say how bad you feel and if she can contact your GP for the results of your blood test for the Endo to peruse and maybe give an increase. Also email louise.warvill@thyroiduk.org and ask for a copy of the Pulse article by Dr Toft and it gives some good info for your GP to absorb and act upon it.

    There are other topics at the top of the page and this is the link (some links within don't work)

    web.archive.org/web/2010122...

  • Never let others put you off saying what you want to /need to say,

    unfortunately someone said what they wanted to and we didn't realise the repercussions. But that was an exception as nearly all of our 8000+ members understand we are just trying to help and support.

    This time last year I too was low in Vit D and hope seemed a long way off - however I supplemented with drops (3000iu+ daily) and found relief from my joint pain and muscle ache, and also felt a lot 'brighter'. It would be lovely to not have to supplement but sadly we don't have enough sunshine. GPs have had a letter from the Chief medical officer of England, Scotland etc. about Vit D and vulnerable groups.

    'Right in the middle' of the range does not apply to TSH, it is an indicator only, folks report feeling better with a TSH under 1, sadly some others just don't know this! In fact most say levels of Thyroid hormone (FT4, FT3) and vitamins and minerals should be near the top of the range too (real ranges) for optimum health. (there's a better explanation on the main TUK site - link above)

    Irons, ferritin, folate B12 and Vit D tend to be low with hypothyroid. I'm sorry your appointment was cancelled as so often happens - maybe you could ring to see if someone else has cancelled instead? With best wishes Jane :D

  • I started on 50mg of levo. When I had my first retest in Jan my TSH was "right in the middle" at 2.5 (lab upper limit is 5). My doctor tried to tell me I was ok now. I disagreed and he let me raise my levo. The change from 50mg to 75mg made a huge difference.

    My GP has a printer on his desk. I ask for the results and he just clicked on print. It wasn't hard - and this is a GP who, by his own receptionist's rather sheepish admission - can't handle transferring a phone call back to reception and asked me to ring back to make an appointment for my next blood test in April !!!

    If your doc won't raise your meds, have you considered taking nutri-thyroid as well? It's sold perfectly legitimately as a health supplement. I currently take one a day, but the bottle says you can take up to 3 a day.

  • According to research in the US - can't remember the book as it's in a box down in the cellar, a 'normal' dose of thyroxin is 1mcg of thyroxine for every pound of normal body weight, possibly a little more if the person is very overweight.

    So, for the someone who weights 10stone, a normal dose would be about 140mcg, say 150mcg per day.

    It really annoys me to see people started on 25-50mcg and left there. If diabetic patients were treated on the basis of a blood test taken every 6 months at a point in time, they'd be dying like flies.

    I eventually ended up on well over 200mcg a day, with not much in the way of positive benefits when a professor of endocrinology agreed to a trial of 10mcg of T3 to replace 100mcg of T4, so I ended up on 150mcg T4 and 10mcg of T3. That was 9 years ago.

    It now seems that I can't convert T4 to T3 at all, and I'm now taking 50mcg of T3/day.

    I also take my tablets when I go to bed, as taking them in the morning made me sleep for over 10 hours at night.

    Last time I saw my endocrinologist she said that my most recent blood tests were 'bizarre'. However, after 3 months on just the T3 and no T4, I've regained some of the flexibility in my muscles that I lost over 15 years ago.

    Having gone from 25-50msg I had a range of tablets that I used to get on repeat prepscription by filling in a form, so I was able to vary the dose slightly, and knew a sister at the local hospital who did the same. I do remember one gp saying that I couldn't possibly change my dose myself. This seemed barmy to me, and I have to admit upping it to 75mcg and this gave me the energy (briefly) to get angry, so I went back and saw another gp - and apparently made quite an impression on her. The second gp then agreed to treat me according to my symptoms as long as I had a measurable TSH.

    I did go on a strop last year, and stop all my treatment during a period of 6 months. I had a blood test done just before going into an obesity clinic, and in a bit of a panic started taking my tablets the night before. I had a TSH of nearly 18. I was quite relieved, as at least it proved I wasn't lazily sitting on the settee all day in front of the tv stuffing my face. The endo was rather shocked to hear that I felt no different with or without the tablets.

    There are private clinics who are known for treating thyroid problems, but talking about one fairly well known one, a gp said to me that the doctor concerned would prescribe thyroxin to a dog.

    Please don't give up, there are quite a lot of books - mainly from the US - and I've found if you're well informed gp's and some endo's will listen and treat your symptoms.

    Good luck.

  • Thank you so much for all your encouragement, it means so much.

    I have much reading to do and some phone calls to make Monday morning :). I simply can't function, literally

    I really appreciate this place & will be following all the advice given

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