What Should I do/ask for?

I have had ME (whatever that is) for 36 years. Since the menopause I have been considerably worse. I deteriorated rapidly 5 years ago, to the point where I quite literally couldn't even sit up in bed. My doctor refused to even come and see me.

Last October (a year ago) I was very ill again. I asked for a blood test and was told only that my iron level was high. I was retested in February this year, when I was feeling somewhat better.

I then had a severe virus in March, which left me with mouth ulcers, cold sores and dizzy spells for 2 months. This all passed, but in June I started deteriorating. I am a computer troubleshooter and web designer. I've been self-employed for many years as every time I was employed I was sacked for being off sick.

I have passed through stages since June - being able to visit my clients but being made ill. Then asking them to come to me. For the last 2 months I haven't been able to do that. I went to my GP in October and asked for a blood test.

The results apparently indicated that I have a high TSH level. My doctor initially refused to treat me, but gave in 3 weeks ago when I was so depressed that I literally lost it with him in his surgery. The following weekend I was so ill that I had to ask a friend to come and stay the night. I've never had to do that before. Another friend phoned my surgery on the Monday and arranged for a GP to visit. Needless to say they didn't - the doctor just phoned me instead. He said he would phone me back a few days later. He didn't and I've not heard from them since.

I asked for my blood results going back several years. These clearly show that my thyroid was underactive a year ago, and three years ago. I was never told.

I am now on Thyroxine - 50mg. It has stopped me getting worse and calmed my heart rate from around 120 to 80 per minute. It also seems to be bringing down my blood pressure.

I have been on ramipril for high blood pressure for 2 years, but my blood pressure has never been remeasured by my surgery. I have a machine and can monitor it myself.

All this sounds like a story of an incompetent surgery. They are the best surgery I have ever had. They are not rude to me, they don't shout at me.

In case you are thinking I spend my time making appointmets - I don't. I visit as rarely as possible. Sometimes I don't go for years on end. There's no point. They aren't interested.

However, when I was told about the thyroid it kind of turned on a light bulb in my head. How many of my problems are due to endocrine system disfunction?

When the doctor rang a couple of weeks ago I asked if we should be looking at my adrenal function too. His immediate answer was no, without even stopping to think. This is despite the fact that the thyroxine says it shouldn't be taken if you have untreated adrenal problems.

I feel that, for some reason I don't understand, my surgery are deliberately keeping me ill. I realise that sounds whacky/fanatical and I don't really believe it, but it makes you wonder.

The question is, what should I do next? I have an appointment to see Barry Peatfield in April, but that's 5 months away and I've already been housebound for over 2 months, feeling so ill I can't even tell you.

These are my latest results - with last October's beside them.

16/10/2012 28 Oct 2011

Serum TSH 5.67 (0.25 - 5.0) 6.60

Free T4 14.6 (12 - 25) 17.1

Serum C reactive protein 7mg/L (<4) I was only given above results for 2011

AST serum 23 iu/l (<38)

Serum ALT 16 (<38)

Serum lactate dehydrogenase 310 (200 - 520)

Serum gamma GT 17 (<40)

Serum total bilirubin 7 (<17)

Alk Phos 113 (40 - 135)

Serum total protein 73 (60 - 80)

Serum albumin 45 (35 - 50)

Feb 2012

TSH - 2.75

Free T4 - not measured

Each print out that I have for the last few years contains different information and for some I have only been given TSH and T4 (when measured)

Yesterday I ordered the adrenal stress test from Dr Myhill. I expect this to take several weeks to come through.

Any suggestions about what I should ask for/ do next would be so welcome I can't tell you. Also, any suggestions for supplements etc that I can take.

I recently read this article on Dr Myhill's site - drmyhill.co.uk/wiki/Patent_...

I suspect that it applies to me, as when I am really ill I always have cardiac symptoms - to the extent that I have been asked if I have a hole in my heart. Yet when I am better, my heart apparently sounds fine.

10 Replies

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  • Sounds as though your surgery has been very lazy and nobody could blame you for changing to another one.

    Could you ask Dr P's office to let you know if a cancellation comes up? That really is a long time to wait.

  • I'm thinking seriously about changing, but right now I'm not well enough to do it. I think I'd need to go to the new surgery, fill in a form and then have a new patient's consultation.

    I can't change the appointment with Dr P, as I'm not going to one of his regular clinics. I live in the W Midlands and he is coming for 3 days in April.

  • Hi rosetrees Have you been back to your dr to ask for a rise in levo. to 75 or 100 mcg. Your tsh is still far too high and should be around 1. your t4 is also very low it should be around the top of the range. I have 2 friends who were put on 50 mcg when diagnosed a few years ago and they are still on it. They are both very overweight and asthmatic and tired all the time. One of them started taking their levo at bedtime and feels quite a bit better (still on 50). It might be worth trying. Leave a couple of hours after eating before taking it.

    Do you take your levo with water and nothing else for at least an hour? Also let the tablet melt under your tongue. It will be better absorbed.

  • Hi - your TSH is way too high and your levo too low. A lot of people (including myself) feel much better when their TSH is below 1. I had problems with my heart and ended up in A&E but they couldnt find anything wrong, once I upped my levo my heart problems went.

    You also mention ME - my husband has been hypo for 12 years, never really well - three years ago VERY ill and diagnosed with ME (which I never believed - I though all his problems were endo/hypo) after a difficult time with his GP I finally got him referred to an NHS endo and he is now on T3 only - within 1 day of taking this medication he began to feel well - within 1 week he could walk up the road - something he hadnt done in two years.

    What I am saying is that you must be asserative with your doctor - tell him you need an increase in your T4. You should begin to feel better fairly quicker. One thing you mustnt do is give - be determined with the GP. Keep posting your results on this forum and people are very good in giving you futher advice. You can get well but you need to monitor your own health if you GP is rubbish (mine is!)

    best wishes

    Tricia

  • It is useful to know what your results are for Serum Ferritin, Serum Iron, Folate, B12 and Vitamin D. Just check you last results to see if they have been tested. Post the results and reference ranges on this forum.

    These are often low in the range for those with hypothyroidism. Your GP would say that any results are normal as they are in range but low levels will certainly affect how you are feeling.

  • for me a TSH above 2 is too high and 0.5 seems to be the best level. Try aiming for that. You may also find after a long time with a slightly raised TSH that at first when your thyroxine is increased you might feel worse as your bodys adapts then better with time.

  • Thanks so much for all your answers. Re-reading what I posted, it sounds as if I lost touch with my sense of humour - clearly depression is part of being hypothyroid!

    When I go to have my thyroid re-tested in January I am going to take a list of other things I want tested - such as T3, free T3, and all the things Maddie mentioned.

    As for the diagnosis of ME - I don't believe there is anything such thing (and I've had it for 36 years). I say that ME isn't a diagnosis, it's a dismissal. It means "we don't know what's wrong and we can't be bothered to find out".

    I'm strongly suspecting it is a genetic tendency towards a malfunctioning endocrine system, coupled with cardiac problems. I suspect it is one's underlying genetic makeup that predisposes this - and that most would improve if their endocrine system was kept functioning at its optimum level. This would be especially true if Dr Myhill's theory that all CFS/ME patients have a patent foramen ovale. I would assume that it is a genetic tendency that prevents this from closing fully at birth.

    But hey, what would I know - I'm just the (im)patient!

  • Hi again - I was just checking what you said in your post of a few days ago and that you mentioned that you had ME/CFS.

    I have this diagnosis as well as hypothyroidism and eventually managed to get a referral to my local hospital that has a specialist clinic for CFS. This has been very useful to me and the Endocrinologist I see has been helpful to me in managing my thyroid condition and doing further investigations.

    It may be worth considering asking your GP if they are prepared to refer you to a ME/CFS clinic. Many hospitals now have this service, you could check to see if your local hospital has a clinic and then you can present your GP with the info. This is what I did and he was happy to refer me. In fact he did not even know that there was a CFS clinic at the local hospital just two miles away from the surgery. I had been trying to get a referal to the centre in Leeds where they have been treating the condition for some time.

    The main benefit of attending this clinic is that I get my thyroid function monitored and I can discuss my treatment options if I feel I'm not responding well.

    This link to 'NICE' Quick Reference Guide for CFS/ME may be useful;

    tinyurl.com/bc2hmxt

  • hi Maddie. I did attend my local ME clinic in May this year. Best described as a joke. The "specialist" said I could go to their clinic if I wanted, but was reluctant to refer me. However, I agreed to go as it seemed wrong to refuse. At my first meeting with the lady from the clinic she sat down, introduced herself and then immediately said to me "what did you think of Dr ***?" I said very carefully to her exactly what I'd said to my GP when he told me the Dr said I had ME. "He doesn't know that, he didn't ask enough questions to make a diagnosis. He's just saying that because that's what you told him."

    The lady virtually jumped of her chair at me and said "would you put in a written complaint please". I have now done that. She then said to me - "I'll read you the letter he sent". Apparently all his letters are the same. She doesn't think he writes them himself and mine was unsigned.

    The advertised "multi-disciplinary team" she told me is actually just her two days a week and she is a trained CBT therapist.

    At the end of the consultation with the specialist, who was friendly but asked no relevant questions at all and didn't ask for any tests, I mentioned to him that I had read about MRI scanning for people with ME. His very telling reply was "with the state of our knowledge we wouldn't do that here". Which I took to me - please don't upset my little world I don't want to have to think.

    Much more interestingly, I later asked for a private referral to a cardiologist. I'm tempted to mention his name here, but won't. He deserves a mention. He was a shining light in the dark hole of the NHS.

    He asked me about my thyroid which, at that time, I believed to be ok. Obviously I was wrong!

    He made further appointments for me to have a 24 hour tape, an echocardiogram and a further consultation with him - all on the NHS. Sadly, I had to cancel them all as I was, by then, too ill to leave the house. They have been rebooked for January.

    He said to me something that no other doctor has ever said - that his job is to be "curious". He said he wanted to ensure that I and my heart are strong enough so that if I find something on the internet I want to try I can phone him and he will be able to tell me whether or not he believes I am strong enough to try it.

    I have only been on the thyroxine for 4 weeks now. I am due for a retest in January. I hope I am at the beginning of a long road. Sadly I feel it will be a fight with GP every step of the way, but hope I'm wrong.

    I have just sent off to Dr Myhill for the 24 hour Adrenal stress saliva test. I also firmly believe that I do have a patent foramen ovale, as described on her site. That is, when I'm really ill doctors listen to my heart and a look of horror comes across their face. I've been asked if I have a hole in my heart. When I'm better little or nothing can be heard. The PFA explains that perfectly. Until I read about it I was under the mistaken impression that you either do or don't have a hole in your heart.

    I will be asking about it when I get to have the echocardiogram and see the cardiologist again

    A referral to an endochrinologist is next on my list. Doubtless I will have to push for it.

    Why does everything have to be such a fight? It isn't what I want to have to do. I so long for a GP that will just talk to me like an equal. Pie in the sky, I know.

    Oh yes. There is no such thing as ME (imho). ME is a dismissal not a diagnosis.

  • It is unfortunate that CFS services vary around the country, I'm lucky that I have a reasonably good one. I agree that all this is a fight but you now seem to have found someone who is prepared to fully look into your problem. Perhaps your cardiologist can recommend an Endocrinologist to you, you could ask him to put a recommendation for this referral, in his letter to your GP.

    Your experience with heart problems sounds interesting and is certainly adding to your health issues. I'm glad to hear that you are seeing a cardiologist. I have read that some CFS sufferers have some kind of heart defect, Mytral Valve Prolapse or Hole in the Heart. These conditions can be treated.

    I've gone down the cardiologist route as I'd had a private exercise ECG that diagnosed me with Angina. The simple lying down ECG did not show this up so I was glad that I'd spent the money to get this done. I do believe that this was all down to living with underactive thyroid for a long time. Since getting my thyroid meds sorted I hardly ever get chest pains and my BP readings are much improved.

    An important note about your iron levels as you mentioned in your original question that you had been told that your iron level was high.

    Please get this checked as in some people the body absorbs an excessive amount of iron from the diet. This causes a condition called Haemochromatosis which can become serious as the excess iron is deposited around the body and can affect the heart, pancreas and pituitary gland causing damage to these organs.

    I never recommened anyone to take iron tablets without a blood test first, I know a number of people with this condition, it is easy to treat once diagnosed.

    I do hope that next year brings about improvements in your health, using this forum will give you lots of info and support - Maddie

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