Please help... I feel like giving up!

I was diagnosed with M.E 12 years ago which has resulted in me giving up work and I am now virtually housebound. I also have Gilbert Syndrome, high cholesterol and low blood pressure and now recently I have been diagnosed with Hypothyroid. I suffer with all the common symptoms including fatigue, constipation, poor digestion, palpitations and shortness of breath etc. I do have a family history of Hypothyroid.

Last summer my health hit an all time low, I was extremely fatigued, lost my appetite and suffered with cold sores and boils. But I just put it all down to my M.E (as that is what

doctors had said it most probably was). It was only when I accompanied my son to the doctors and I fainted that I realised I was a more ill than I thought. A GP there did an ECG and everything was fine but I still made myself an appointment for some blood tests.

Test Results;

30/01/2014

Free T4 level - 12.8 pmol/L (11.0 - 23.0)

TSH level 5.6 mu/L (0.35 - 5.50)

Cholesterol - 6

Ferritin 24 ug/L

The doctor refused to give me anything and told me to come back in 3 months. However, I wasn't coping and couldn't wait that long so after a month I went back to see a different doctor who ordered for me to have more blood tests and prescribed me Levothyroxine sodium 25 microgram. This was only after I begged and me and my husband refusing to leave until I was given something.

Test Results;

28/04/2014

TSH level - 4.17 mu/L (0.35 - 5.50)

25-HO vit D3 level - 51.7 nmol/L >50.0

Folate - 2.7 ug/L (2.0 - 19.0)

My vitamin B12 was 1641 ng/L (190 - 900) but I have monthly B12 injections.

When I went back to the doctor he said that all my results were normal so would not up my medication as it would damage my heart. So when I asked him "So I just have to go home and suffer?" He replied with "I'm afraid so, yes". I left and when I got home, I cried.

It's only after reading posts on this site (that I'm so glad I have found) that I had the courage to return to my doctors surgery and request for my thyroid results of the past 12 years.

Test Results;

Sept 2000 - TSH - 3 mU/L 0.40 - 4.0 mU/L

July 2001 - TSH - 2.38 mU/L 0.40 - 4.0 mU/L

June 2009 - TSH 3.81 mU/L 0.35 - 5.5 mU/L

Now I would like advice on wether I should go private and have private blood tests as I have given up hope with my doctors and not got the energy to fight them, for them to only do nothing.

Many thanks,

Angela

36 Replies

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  • If i was in your shoes i would simply order NDT from the web and treat yourself

    PM me for details of suppliers

    as i am pretty sure the ME diagnosis is and has been a load of nonsense

  • Thank you for replying I have been thinking that I may not have M.E. I am really thinking about self medicating as the way my local GPs are it is really my only option. I will pm you.

  • A folate and ferritin that low is not normal, without good levels of these you will get nothing from your B12 jabs, it's probably hanging around unmetabolised. You need to get the doc to prescribe 5mg folic acid for at least 4 months, if he won't you can get it from amazon. You also need iron, ferritin is too low. You may need more frequent injections too. Have a look here:

    b12deficiency.info and in the other useful links section there's a Facebook group that can help and advise you.

  • I don't think my doctors will prescribe me anything so I will have a look on amazon. I've had a quick look at that site and there is lots of useful information but still have to read more.

    Thankyou

  • The 5mg ones are here:

    amazon.co.uk/Bio-Tech-Folic...

    Standard NHS protocol is take one a day for 4 months, then reduce to a maintenance dose 1 to 7 times a week.

    Or you could try methylfolate, which is a more active form and is better for some people (with MTHFR genetic defects). Trial and error really as to which one suits you best. Some people get on with one and not the other, and vice versa. I take both, and I'm playing around with doses all the time so not really a "right" answer.

    Solgar do methylfolate at various strengths on Amazon - 400mcg, 800mcg or 1000mcg. You probably wouldn't need as high a dose as the folic acid, maybe 800mcg to 1000mcg per day, but build the dose up slowly, see how you tolerate it:

    amazon.co.uk/s/ref=nb_sb_no...

  • I should say they blooming should prescribe it, under 3 is officially deficient according to the new guidelines:

    bcshguidelines.com/document...

    "A serum folate level less than 7 nmol/L (3 μg/L) is indicative of folate deficiency (Grade 1B)."

  • To have any hope of processing any thyroid medication you take, you need to start working on getting your ferritin, folate and vitamin D levels up.

    To increase your ferritin you need to take iron pills. There are loads of different kinds of iron you can take, and how fast you get your levels up depends on the type of iron you take, how strong it is, and how well you can absorb and tolerate it. I can tell you what I've been taking, but be aware that there are lots of other kinds you can try if they don't suit you.

    I buy my iron from Lloyds - no prescription required - and it costs less than a fiver a box. I buy ferrous fumarate 210mg in boxes of 84. This is enough for 3 pills a day for 28 days. Spread the pills out throughout the day, but take them 4 hours separate from your thyroid treatment. It is important to take 500mg - 1000mg of vitamin C with each iron pill. It helps your body to absorb the iron. It has other advantages too. Iron pills cause constipation in many people, and vitamin C has the opposite effect, so hopefully it will balance things out a bit.

    I'm not familiar with the best supplements for folate and vitamin D, so hopefully someone else can help with that.

    Your treatment has been appalling. With the right advice you can do a lot to help yourself to feel better. Don't despair!

    Oh, one other thing. Your cholesterol of 6 is not a problem. Forget about it, and don't let anyone put you on statins. If this worries you can I suggest you read a book called The Great Cholesterol Con by Dr Malcolm Kendrick.

    amazon.co.uk/The-Great-Chol...

    And also have a look at his blog :

    drmalcolmkendrick.org/

    I no longer worry about my cholesterol level, and it is very liberating. But of course you must make up your own mind!

  • My doctors did try to get me to take statins but I refused because most medications don't agree with me, I don't know why.

    I have tried iron before but it made my constipation worse so I will try your advice of taking it with vit c.

    I will check out the blogs you suggest.

    Thank you for replying and advice.

  • would you try your iron with eating a beet per day? for constipation. Nutrition is important, eat lots of fruits and vegetables, no more than once a week meat, if you do eat meat. No junk no fried food.

  • I will be honest I have a poor appetite and I am just too tired to eat somedays. I know I am the only one to sort this out, I have my family go on at me daily about my eating. I have found eating pears has helped with my constipation.

  • ok, that's why you need to be optimized for hypo. But please do try to eat a beet per day. I put it in my shake every morning. You will feel such a difference when you got to bathroom. Please do. You always had poor appetite?

  • Yes my appetite is always poor and at times can't face eating a meal . Sometimes my husband makes me smoothies so I have food. Lots of foods bloat me but bread isn't one of them . I haven't always been like this I do try because I know I need my food for energy .

  • From someone with unbelieved symptoms, low blood pressure, suggested CFS/ME after half thyroid out etc too ...

    please, please go back and state that 25 mcg is merely a starting dose, I understand about the energy to fight them. Are you feeling ANY improvement at all, has it been 6 weeks? Most folk (there are exceptions) feel better with a TSH of 1 or under (see the Dr Toft Thyroid book available at most Chemists) 100 mcg is a full replacement dose for a seven stone person, if your thyroid has given up and you weighed 1st 10lbs 25mcg would be about right (about the same dose for a small dog!). Anyone feel free to correct me if I'm wrong.

    I know nothing of Gilberts except it's liver problems, PBC? - are you taking B12 to help that or have you also got pernicious anaemia (more common if vegetarian, sorry).

    One thing I've learned is if you're low in one nutrient it's likely you'll be in others (especially with PA) and sorting them usually helps. Also we tend to collect autoimmune cards :( Have you had TPO antibodies to test if it's autoimmune e.g Hashimotos (symptoms/bloods will vary as thyroid is attacked)

    Heart problems are more likely to occur when low thyroid function is not treated adequately. (not to scare you) J :D

    hypothyroidmom.com/is-your-...

  • I have been on 25 mcg for 2 months with no improvement . I haven't even been told to come back to have my bloods retested . Gilbert's is when your bilirubin is high in your liver, nothing to worry about according to the doctors. I have B12 injections on the advice of a doctor I saw at the hospital for my ME a few years ago. I only had tsh tested but think I will have to look into having private blood tests . Will order dr Toft,s book as I need to start getting all the knowledge I can

    Thank you

  • Hi! I had Sheehan's syndrome when I was 29 years old. (That's when you bleed out in childbirth). It messed up my Adrenal and Pituatary etc. The doctor jump started my body with a mass does of Steriods. Every thing started to work except my thyroid. So my thyroid had died. I was on synthroid, for over 25 years and then placed on Levothryroxine . I am on 150mg now and I am having my blood tested next Friday. Over the years my dosage was changed so many times. I worked full time and raised 4 children. I am now 65 years old and I was just diagnosed with Primary Biliary Cirrhosis. This is an auto immune disease of the liver. ( it destroys the bile ducts. A lot of the same symptoms of thyroid disease.

    So I get to go through all this again. So much fun.

    I understand every one being upset when you just don't feel right!

    I wish you all good luck!

  • I couldn't go to sleep until I had replied to your post. I'm sorry to read about your experiences, but thankfully you have arrived here and have some great information from reallyfedup, hamster1, humanbean and spareribs. Do take heart that as poorly as you feel right now, and despite your GPs, you can take back control of your health. To agree with your question that you have to go home and suffer is appalling, but it indicates only that you've reached the extremities of the GP's ability to help you, not of your ability to help yourself - you've only just begun to tap that resource. I would suggest you change your GP practice if you can, but also consider reallyfedup's suggestion of self-medicating with NDT in addition to the other supplements mentioned. Let us know how you get on :-)

  • Ah bless you. Reading all the posts It has made me think I need start taking care of my own health and start fighting back . So glad I found this site .

  • Definitely change your GP practice. Many people who really have a thyroid gland problem get fobbed off with any other illness except a thyroid gland dysfunction. This is due to doctors being told that the TSH is the 'exquisite' test for thyroid gland dysfunction. They know nothing whatsoever. When the blood tests were brought in it took a few years before 'other' diseases were named, i.e. ME, CFS and fibromyalgia probably due to inadequate thyroid hormone regulation which wouldn't show on a TSH.

    25mcg is woefully low and wont do you much good as it wont raise your metabolism.

    The problem is finding a knowledgeable GP nowadays who knows how to treat a thyroid gland dysfunction. You've suffered enough and pleaded with your GP. We know our bodies and instinctively know all is not well. Your TSH is rising - although that's from your pituatory gland not the thyroid gland. This is just for information.

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

  • I am thinking about changing GP but I am thinking more about going private as I see it as my only option right now.

    The 25mcg isn't having any effect on me but my doctors won't prescribe me any higher.

    I am worried about my own health but my eldest son has also got M.E and has had it for 9 years, so as his Mum I'm starting to question his health.

    Thankyou

  • It may well be worth your health to go private, if you can. Email louise.warvill@thyroiduk.org for a list of sympathetic doctors. Also post a new question, giving your area and asking if anyone has seen a good doctor and ask for them to send details by private message. I suggest your son be seen too, as some things do run in families. Maybe see the doctor first so you can assess if he is suitable.

  • I am so sorry that you have had to suffer all these years. According to the late Dr Skinner a TSH of 3 indicates hypothyroidism. Indeed in other parts of the world the range is 0.2 to 2.3. I had M.E. for 16.5 years and lost my career. My thyroid condition was found in Greece and I had a total thyroidectomy. If it hadn't been for Dr Skinner I would still be suffering from thyroid symptoms as he prescribed thyroid hormones according to clinical symptoms of hypothyroidism and not TSH. Your GP is wrong to accept test results over sympyoms

  • It's nice to hear off somebody else who has M.E, I'm sorry that you lost your career.

    I have read a lot of posts about how good Dr Skinner was. I wish I could of had a chance to meet him.

    Is your health better now?

  • Hi Dar68, I am much better now, I think my many years of untreated thyroid disease has meant that it is hard to reach the level of health I should have known. I am OK with how I am now but I always hope for better. I really hope you get the treatment you need. I spoke with a GP friend tonight who says it is important to look at the clinical presentation and that a trial of thyroid hormones is cheap and not dangerous. I wish you well.

  • Thank you. I know I have a long way to go but hope in the future I to can write a post that I am feeling better too.

  • yes, agree, TSH is too broad of a range, you need to look at symptoms!

  • Hi, I can not pretend that I am an expert on this subject yet, but I hope I can help. Like you I have suffered for many years with fatigue and an endless list of health issues and only in the past 12 months, have they diagnosed hypothyroidism. This is in-spite of me having half of my thyroid removed in 2012 due to having a goitre. But to get to the point, I have largely diagnosed myself, I sent off for a package from thyroid uk the information costs approximately £12. This was the best thing I have ever done. They have a list of sympathetic private doctors who will do more tests than your GP. If you have a sympathetic GP they may do most of the blood tests requested by the consultant on the N H S. Normally GPS, only test TSH and T4 tests for thyroid problems and if these come back in the normal range but have Hashimoto disease or maybe Graves' disease they won't pick it up. This was my case, I have have now been diagnosed with Hashimoto disease which is an auto immune disease, they have also found new growths on what is left of my thyroid. Go to thyroiduk.co.uk and read the info on the web site it may help you, they will also speak to you if you need help. I hope this helps you, I'm not good at this typing stuff.

  • I have been on the thyroiduk website and going to join. I've got a list of the doctors on the site. I have lost all hope in my GPs so I am very much thinking of going private.

  • I too have CFS/ME and found the NHS route very limiting in what it could offer as far as tests and diagnosis. Being told you have CFS/ME doesn't help us because it's only an umbrella term for a collection of symptoms. Going to a private doctor who specialised in CFS/ME gave me the answers I needed to what was causing this wretched illness. Mine was Mitochondrial Failure, Hypothrydoidism and Adrenal Exhaustion. All treatable but not on the NHS! I found a great resource was thyroidUK's doctors list, along with Dr Sarah Myhill's website - full of very helpful info. Before you embark on private healthcare, find a healthcare insurer. I use Medicash. There's also Simply Health. They will pay for your first consultation and tests, also a selection of complementary therapies, which always benefit us CFS types. Best of luck. X

  • I have looked at some of her stuff and seems to make some sense with regards to auto immune conditions.

  • It is nice to get a reply off another person with M.E. How are you feeling now?

    I have looked up about Dr Sarah Myhill she seems a very helpful doctor she seems to have a lot of knowledge.

    Thankyou

  • Hi Hea72

    I am at my wits end with symptoms and have been told I have cfs / fybromyalgia some years ago I was told I had high thyroid antibodies I am on 100mc thyroxine and am plagued with muscle stiffening pressure in head and a barage of symptoms including vibrating sensations were would I get a p rivate doctor who specialises IN CFS

  • Angela, typical problem with docs. TSH is too high. American Endocrinology Association recommends TSH 0.3 -3.0. Mine is at 0.03 and I have finally energy, no palpitations, optimized. Labs have different ranges. I once was 3.47 and felt I was dying, total exhaustion and body breaking down. Dr. Hotze and Dr. Richard Shames have clinics in USA specialized for thyroid disease and advocate NDTH for treating hypothyroidism, they're also authors. I use Armour Thyroid, tried 5 days on levo and got sick and stopped it. Germany, USA and Canada manufacture their own NDTH brand.

  • Unfortunately, the US endocrinology/thyroid societies no longer use the 0.3-3.0 TSH range; last year they conspired to increase the range to 0.4-4.5. Their reason? Too many people would be diagnosed hypo and require treatment using the lower range. A pity the statin pushers don't think that way.

  • Hi Dar68. So sorry to hear you are suffering so much. I just wanted to say that high cholesterol can be a symptom of hypothyroid, so once that is being successfully treated, the cholesterol should correct itself. Also, low BP can be a symptom of low adrenal function - the adrenals must be functioning in order for the thyroid to work (the 2 glands are very interlinked).

    It's possible that the ME symptoms are also due to low thyroid and low adrenal (I have had ME, so have an idea what you're going through - it now seems as though it was due to my thyroid and adrenals not working properly.......).

    I would highly recommend Dr Peatfield's book (just type his name into Amazon and it will come up) as a good place to start. I used to think that I had lots of unrelated health problems, but it turns out that they are ALL due to low thyroid and adrenal function! I'd love to hear how you get on - please feel free to send me a private message, if you would like to chat :) . I know things must feel really rough at the moment, but please don't give up! We're all with you and sending you lots of love xx

  • Thank you for your kind message, I have been feeling very low and frustrated today and so angry at my doctors. To think that my wasted years of ill health could have been thyroid related all along. I'm just so glad that I found this site with a group of people who understands how I feel helps so much.

  • You are most welcome. And I feel the same as you about this website!! It's been such a help to me. I obviously can't say for sure that all your health problems are thyroid related, but I'm willing to bet that getting the thyroid sorted out would help :) . As Dr P says, low thyroid can affect every single part of the body. I can totally understand you feeling angry at your doctors.....and you are entitled to feel that way. But don't let it eat you up (easier said than done, I know!). Take some time out of each day to practice deep breathing and to plan what you will do when you're well - sounds twee, I know, but you WILL be well one day. Hang on in there. xx

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